Planning your funeral doesn’t have to be scary

— Says the author of ‘It’s Your Funeral: Plan the Celebration of a Lifetime Before it’s Too Late’

‘It’s Your Funeral! Plan the Celebration of a Lifetime — Before it’s Too Late’ is by Kathy Benjamin, Quirk Books, 176 pages, $14.40.
‘It’s Your Funeral! Plan the Celebration of a Lifetime — Before it’s Too Late’ is by Kathy Benjamin

By

The pandemic has forced many to rethink and readjust their present with their future. Some have left jobs that provided steady paychecks and a predictable complacency for unknown, yet meaningful passion projects. Others are are taking more control of their destinies as they see fit. Unwilling to settle in life anymore. So why would you settle in death?

That’s the question Kathy Benjamin, author of “It’s Your Funeral! Plan the Celebration of a Lifetime — Before it’s Too Late,” asks. Amid the book’s 176 pages, Benjamin exposes readers to death in a light, humorous, and practical way, akin to a soothing bath, rather than a brisk cold shower.

The Austin-based writer’s niche is death (her last book centered on bizarre funeral traditions and practices). Having panic attacks as a teen, Benjamin said enduring them felt like she was dying. It was then that she started wrestling with the idea of death.

“I feel like I’m actually dying all the time, so maybe I should learn about the history of death and all that,” she said. “If I’m going to be so scared of it, I should learn about it because then I’d kind of have some control over it.”

It’s that control that Benjamin wants to give to readers of this book. She introduces readers to concepts and steps one should contemplate now, in order to make sure the last big gathering centered on you is as memorable as you and your loved ones wish. Poring over the book, one finds interesting final resting options such as body donation that goes beyond being a medical cadaver, “infinity burial suits” that lets one look like a ninja at burial, but also helps nourish plants as decomposition begins; and quirky clubs and businesses that allow one to make death unique (as in hiring mourners to fill out your grieving space and time, and designing your own coffin).

Kathy Benjamin knows death can be scary, but she's determined to show that planning your own funeral doesn't have to be.
Kathy Benjamin knows death can be scary, but she’s determined to show that planning your own funeral doesn’t have to be.

Now before you think this is all a bit macabre, Benjamin’s book also serves as a personal log so you can start planning your big event. Amid the pages, she offers prompts and pages where you can jot down thoughts and ideas on fashioning your own funeral. If you want to have a theme? Put it down in the book. You want to start working on your eulogy/obituary/epitaph, will, or your “final” playlist? Benjamin gives you space in her book to do so. It’s like a demise workbook where you can place your best photos to be used for the funeral and your passwords to your digital life, for your loved ones to have access to that space once you’re gone. If all the details are in the book, a loved one just has to pick it up and use it as a reference to make sure your day of mourning is one you envisioned.

As Benjamin writes: “Think about death in a manner that will motivate you to live the best, most fulfilling life possible. By preparing for death in a spiritual and physical way, you are ensuring that you will succeed right to the end.”

“Everyone’s going to die, if you’re willing to be OK with thinking about that, and in a fun way, then the book is for you,” she said.

We talked with Benjamin to learn more about the details of death and thinking “outside the coffin” for posterity’s sake. The following interview has been condensed and edited.

Q: How much time did it take you to find all this data about death? You share what was in the late Tony Curtis’ casket.

Kathy Benjamin: I have shelves of books that range from textbooks to pop culture books about death, and it’s something that a lot more people than you think are interested in so when you start doing online research you might just find a list of, here’s what people have in their coffin and then from there, you’re like: ‘OK, let’s check if this is true.’ Let’s go back and check newspaper articles and more legitimate websites and things and those details are out there. People want to know. I think of it as when you see someone post on Facebook — somebody in my family died. I know for me, and based on what people reply, the first thing is: What did they die of? We want these details around death. It’s just something people are really interested in. The information is out there and if you go looking for it, you can find it.

Q: Was the timing for the release of the book on point or a little off, given the pandemic?

KB: That was unbelievable timing, either good or bad, how you want to look at it. I ended up researching and writing during that whole early wave in the summer (2020) and into the second wave, and it was very weird. It was very weird to wake up, and the first thing I would do every morning for months was check how many people were dead and where the hot spots were, and then write … just a lot of compartmentalization. My idea was because people who were confronting death so much, maybe it would open up a lot of people’s minds who wouldn’t normally be open to reading this kind of book, they’d be like: ‘OK, I’ve faced my mortality in the past year. So actually, maybe, I should think about it.’

Q: Is there anything considered too “out there” or taboo for a funeral?

KB: I always think that funerals really are for the people who are still alive to deal with their grief, so I wouldn’t do anything that’s going to offend loved ones. I can’t think of what it might be, but if there’s a real disagreement on what is OK, then maybe take the people who are going to be crying and keep them in mind. But really, it’s your party. Plan what you want. There are so many options out there. Some people, they still think cremation isn’t acceptable. Because death is so personal, there’s always going to be people who think something is too far, even things that seem normal for your culture or for your generation.

Q: You mention some interesting mourning/funeral businesses, but many seem to be in other countries. Do we have anything cool in the U.S. as far as death goes that maybe other places don’t have?

KB: One thing we have more than anywhere in the world is body farms. We have a couple and just one or two in the entire rest of the world. The biggest in the world is at the University of Tennessee. For people who don’t know, body farms are where you can donate your body as if you would to science, but instead of doing organ transplants or whatever with it, they put you in the trunk of a car or they put you in a pond or they just lay you out and then they see what happens to you as you decompose. Law enforcement recruits come in and study you to learn how to solve crimes based on what happens to bodies that are left in different situations. I think they get about 100 bodies a year. I always tell people about body farms because if you’re into “true crime” and don’t care what happens to you and you’re not grossed out by it, then do it because it’s really cool and it’s helpful.

Q: You mention mummification and traditional Viking send offs, what about the burning of a shrouded body on a pyre? Have you heard about that? It was the way hunters were sent into the afterlife on the TV series “Supernatural.”

KB: I haven’t heard of anyone doing it in America but obviously that’s a big pop culture thing. For Hindus, that’s the way it happens in India … you go to the Ganges, and they have places specifically where you pay for the wood and they make a pyre and that’s how people go out. I doubt there’s a cemetery or a park that would allow you to do it in the U.S., but on private land, you’re pretty much allowed to do whatever. I would definitely check on regulations. You would have to get the pyre quite hot to burn the body to ash, like hotter than you think to make sure you don’t get a barbecued grandpa.

Q: In your research, have you come across anything that completely surprised you because it’s so unheard of?

KB: There’s been things like funerary cannibalism, which is where you eat loved ones after they’ve died. But once you’ve read the reasons why different tribes around the world have done it, you’re like ‘OK, I can see why that meant something, why it was meant to be emotional and beautiful.’ Things like sky burial in Tibet, they have a Buddhist monk chop up the body and lay it out for the vultures to come get. Part of it ties back to Buddhist tradition but also it’s Tibet, you can’t dig holes there in the mountains. So, there’s a logical reason for it. When you look at these things that originally seem gross or weird, once you learn the reasons behind them it all comes back in the end to trying to do something respectful for the dead, and trying to give the living that closure.

Q: What are your plans for your funeral?

KB: I definitely want to be cremated. I don’t know if I want people to necessarily come together for a funeral for me but like I have a playlist, and even before the book I had a whole document on the computer of what I wanted. I want all the people to know about the playlist and then they can kind of sit and think about how awesome I am while the sad songs play, and then there’s different places that I would want my ashes scattered.

Complete Article HERE!

The Best Books to Help You Cope With Death and Dying

How the wisdom of Joan Didion, death doulas, and Big Bird have prepped me to dance into the void (and plan my estate).

by Mary Frances Knapp

The chillest people I know are the ones surrounded by death. I’ve spoken with a lot of them over the years: end-of-life doulas, hospice workers, embalmers; eco-coffin designers, grief counselors, and country homesteaders; all of whom look their inevitable demise square in the face. They’ve all taught me something different about death and dying, but they’ve also driven home a similar point: Death doesn’t have to be this freaky egg that gets cracked on your head out of the blue. Death—rather, dying—is a process, and that process is what you make of it.

One of my first writing gigs in college was all about death (which is why I’m on this coffin-shaped soap box in the first place). I freelanced for an end-of-life planning business in San Francisco, which was part practical, local resource for what to do after a loved one dies, and part death blog (that was my jam). We were always careful not to stew in topics related to death and dying in a macabre way—the landing page was baby blue, and blogging topics ranged from DIY crafts for memorializing loved ones to learning more about biodegradable urns. Why on Earth they let a 19-year-old with no knowledge of funeral homes write for them is beyond me, but I’m so glad they did. I learned that when you’re constantly surrounded by death, it doesn’t feel as foreign and unnavigable. Of course, those in the death and dying industry don’t become magically exempt from the emotional demands of death, and having the time and resources to live and die well is a privilege. But in the years I spent learning about estate planning, or talking to home health aides about what you can do literally moments after a loved one has died to find some peace, I learned that dying well is just like living well: You reap what you sow.

So where do you start? Books. Read what other people have been through in hospitals, at home, or with their own existential crises. While the titles below are hardly a definitive guide to death and end-of-life planning, they’re the ones that have helped me feel better prepared to dance into the void.

No one does death like le French

Simone de Beauvoir is a *chef’s kiss* great Frenchy to hold your hand through the topic of death. This is one of the author’s most beloved books from the 1960s, and it takes you through the experience of her mother’s death with an acute sensitivity to detail; it’s Beauvoir’s talent for focusing on the more “banal” moments of terminal illnesses and dying with philosophical panache that makes it so good.

A Very Easy Death by Simone de Beauvoir

Learn how physicians feel about patient care

This one reads like a diary, if diaries were super exacting tell-alls by medical professionals. Author and doctor Ira Byock is a palliative care physician, and getting insights into the strides and pitfalls of his end-of-life care experiences teaches you a lot about the kinds of questions you’ll want to ask when/if you ever end up navigating similar situations and medical institutions. It’s the kind of book that just makes you feel like you have someone on your side, even in the face of daunting health scares.

The Best Care Possible by Ira Byock

Yes, there are end of life doulas

We usually think of doulas as kindly granola folk who help bring wee babes into this world, but there are also doulas and death midwives who are trained to accompany those who are dying and usher them into whatever comes next. I’ve spoken with a lot of them over the years, but this book rec actually comes from a friend who just started pursuing a career in end-of-life care. “I picked up this book to learn more about reclaiming deathcare as a sacred, holistic, and intimate practice,” she told me, saying she’d absolutely suggest this book for those who could see themselves in a similar profession, or who just want to learn more about the above.


Anne-Marie Keppel

Death Nesting by Anne-Marie Keppel

There’s room for creativity

Overall, I think the United States has this knee-jerk reaction to sterilize the processes of death and dying. We exact our funerary ceremonies with a kind of uniformity and somberness—which is fair. Death is hard, and everyone grieves differently. But, dude. Have you ever seen the coffins in Ghana? They’re beautiful, and personal. A really celebratory labor of love.

The Buried Treasures Of The Ga: Coffin Art In Ghana by Regula Tschumi

Raise your hand if you’ve got daddy issues

A hard read, but a super cathartic memoir by Jesmyn Ward for anyone who has lost a loved one at a young age, or who tightrope-walks their relationship with their parents. The book follows the author’s relationships with five different people in that sense, and it’s also a powerful portrait of what it means to live and mourn as a Black person in the American South.

Men We Reaped: A Memoir by Jesmyn Ward

That’s one way to cope

We’ve all had it happen, or seen it happen to someone else: Rather than confront our grief, we pour ourselves into a new hobby or time-suck pursuit (cc: all those quarantine sourdough loaves). And that’s OK. There’s no etched-in-stone timeline for grief, and this memoir by Long Litt Woon, written about her late husband, is a great reminder of that; it’s about all the curious, dark, and beautiful places our grief can take us, such as mushroom hunting. “Long tells the story of finding hope after despair lightly and artfully,” writes the New York Times in a review that I think really hits the nail on the head. “[She writes with] self-effacement and so much gentle good nature that we forgot how sad she (and we) are.” Then, like the narrator, we remember. But guess what? We’re still in one piece. 

The Way Through the Woods by Long Litt Woon

If you’re not spiritual…

… Then read every essay and book by Joan Didion, honestly. Her writing will spoon feed you a tough yet deeply observant love, and feels like getting a sit-down chat from your most level-headed relative about hippies, the Pioneer West, and, in this case, the death of her husband and collaborator John Gregory Dunne. So many books on death and dying are deeply spiritual or religious, but for those of us who have only ever had faith in logic and, IDK, Pokémon, Didion is your gal. No one else writes quite like her about the surreal logic of grief-brain with as much honesty and accuracy. 

The Year of Magical Thinking by Joan Didion

One for the kids

Do you have Muppet Feels? (Of course you do.) You might remember the legendary Sesame Street episode where Big Bird deals with Mr. Hooper’s passing. Heavy shit, man. The children’s book adaptation of that episode brings the same nuanced tenderness of the show, and literally everything in life is better when Big Bird is by your side. Give this to a kid, or anyone going through it.

I’ll Miss You, Mr. Hooper by Sesame Street

See you in the next life.

Complete Article HERE!

‘Your mammy was a flower’

— A young boy’s bereavement

“It was nice to think that Mammy was so well-liked by God, since she was a massive fan’: Séamas O’Reilly.

One of 11 children, Séamas O’Reilly was just five years old when his mother died. In an extract from his touching new memoir, he recalls with childlike clarity the awful day of her wake

By

One thing they don’t tell you about mammies is that when they die you get new trousers. On my first full day as a half-orphan, I remember fiddling with unfamiliar cords as Margaret held my cheek and told me Mammy was a flower. She and her husband, Phillie, were close friends of my parents and their presence is one of the few memories that survive from that period, most specifically the conversation Margaret had with me there and then. “Sometimes,” croaked Margaret in a voice bent ragged from two days’ crying, “when God sees a particularly pretty flower, He’ll take it up from Earth, and put it in his own garden.”

It was nice to think that Mammy was so well-liked by God, since she was a massive fan. She went to all his gigs – mass, prayer groups, marriage guidance meetings. She had all the action figures – small Infant of Prague statuettes, much larger Infant of Prague statuettes, little blue plastic flasks of holy water in the shape of God’s own mammy herself. So, in one sense, Margaret’s version of events was kind of comforting. It placed my mother’s death in that category of stories where people met their heroes.

As Margaret reassured me that God was an avaricious gardener intent on murdering my loved ones any time he pleased, I concentrated once more on my new corduroy slacks, summoned from the ether as if issued by whichever government department administers to the needs of all the brave little boys with dead, flowery mams – an Infant Grief Action-Pack stuffed with trousers, sensible underpants, cod liver oil tablets and a solar-powered calculator.

The cords were inordinately delightful to fiddle with, most especially when I flicked my finger up and down their pleasing grooves, stopping only each time a super-heated nail forced a change of hands. I think it’s fair to say I had no idea what was going on, save that this was all very sad and, worse, making Margaret sad. In that way of five-year-olds, I feared sadness in adults above all things, so I leaned my head upon Margaret’s shoulder to reassure her that her words had scrubbed things clean. In truth, I found the flower story unsettling. I couldn’t help picturing Mammy awakening to a frenzy of mechanical beeping as the roof caved in and God’s two great probing fingers smashed through the roof to relocate her to that odd garden he kept in heaven, presumably so he’d have something to do on Sundays.

In fact, my mother died from the breast cancer that had spun a cruel, mocking thread through her life for four years. The hospital rang my father at 3am on Thursday 17 October 1991. Their exact words went unrecorded, but the general gist was that he’d want to get there quick. I can’t imagine the horror of that morning, my father racing dawn, chain-smoking as he managed the 90-minute drive from Derry to Belfast in less than an hour. When he arrived, she had already passed. Sheila O’Reilly was dead and my father drove back to Derry as the sole parent of 11 children.

Contrary to the expectations of non-Irish people, it was highly unusual to have a family so large. My parents were formidably – perhaps recklessly – Catholic, but even among the ranks of the devout, to be one of 11 was singularly, fizzily demented. At best, you were the child of sex maniacs, at worst the creepy scions of some bearded recluse amassing weapons in the hills.

“Sometimes when God sees a particularly pretty flower, He’ll take it up from Earth, and put it in his own garden.” Séamas O’Reilly.
“Sometimes when God sees a particularly pretty flower, He’ll take it up from Earth, and put it in his own garden.” Séamas O’Reilly.

In some school years, it was easier to isolate the age groups in whih we did not have a representative. Even within our own home, it was necessary to erect internal subdivisions that simplified things. This we did by separating into three distinct castes, which ran in age order thus: the “Big Ones” (Sinead, Dara and Shane), the “Middle Ones” (Maeve, Orla, Mairead and Dearbhaile) and the “Wee Ones”, (Caoimhe, me, Fionnuala and Conall). When my mother died, the youngest was two. I was three weeks shy of my sixth birthday although the celebration of that was, I have been led to believe, a decidedly subdued affair.

It’s an infuriating quirk of the brain that I remember my first taste of a banana sandwich, but not the moment I was told Mammy had died. The closest I can manage must be some moments – perhaps hours – later: a clear image of walking through pyjama-clad siblings who were crying in all directions.

We’d been to see Mammy the preceding weekend. I once more find I only have very faint memories of that final visit. I can see her in bed, tired and pale, laughing through the web of tubes taped to her face like a child’s art project, but it’s impossible to know if this was on that occasion or some earlier trip. Those tubes were a common point of reference for us in the years after her death, my sister Maeve becoming convinced they’d strangled her.

Apart from that I can remember very little of that week, save that morning with Margaret and a smattering of sensations from the subsequent wake. My father had called Phillie and Margaret with the news, so they could look in on us until he returned. It also fell to them to intercept Anne, our housekeeper, a saintly woman who tended to the house and its numerous infant contents, most especially since Mammy had fallen ill. Anne was as steady as rain and implacable as taxes; the kind of strong, rooted Donegal woman you could imagine blithely tutting if her hair caught fire, but we watched as the news made even her steadfast frame crumple backward.

Family tree: the author and his 10 siblings in 1990. Séamas is looking over Conall’s shoulder.
Family tree: the author and his 10 siblings in 1990. Séamas is looking over Conall’s shoulder.

This was, of course, a mere precursor to the sight of my father returning to sobs and screams, holding us all as we heaved, and crying loudly himself. The sight of my father crying was so dizzyingly perverse that I couldn’t have been more shocked and appalled if bats had flown out of his mouth. Daddy’s stoicism was a solid fixture in my life. This was the man who had forged time and space with his own rough hands, unafraid of heights or the dark or spiders or anything, save for being caught without some WD-40. In many ways, my father’s grief in that moment hit me harder than anything else. It would be from the wreckage of that moment that he would reassemble the universe for us.

Mammy’s body returned that afternoon and was to be waked in our home, a great big bungalow on the border of Derry and Donegal situated far out from the city so that we rarely had many visitors. Now, there were people everywhere, the life squashed out of them, all serious and nervy as they carried dishes about the place and sheepishly searched, cupboard by cupboard, for whisks or dish cloths. Over these two days we would host a throng of well-wishers who’d come to pay their respects, see how we were doing, and inevitably bring us food, plates or cutlery.

In the time-honoured tradition of all Irish crises, sandwiches were liberally distributed. Egg and onion, of course, but also ham, and not merely the thin, wet slices you got for school lunches, but the thick, rough-cut chunks of ham that still had the fat on – the type used exclusively by millionaires, Vikings and, it was taken for granted, Protestants. To add to the sense of occasion, 15-year-old Dara had been dispatched to pick up 200 Regal King Size cigarettes. The 160 that made it back from the shop were distributed on oblong trays of polished silver. Individual cigarettes were also offered freely to guests by hand, as if we were not a gathering of grief-stricken Northern Irish Catholics at all, but a cabal of New York sophisticates toasting a dazzling new biography of Lyndon B Johnson.

Everywhere stood puffy-eyed people with features so red and blotchy it was as if bandages had just been ripped off their faces. Most guests, already sombre and teary when they arrived, were stunned into traumatic shock once they greeted the body. Gripping the coffin’s edge, they stared at my mother, who lay stately, pale and dead at 43. Some regarded her casket as if it were a grisly wound they’d discovered on their own body, registering the sight with a loud gasping horror that made all around them redouble their own racking sobs. Some collapsed in the manner of someone cruelly betrayed, as if they’d arrived at the whole maudlin affair on the understanding they were being driven to a Zumba class.

In any case, a sniffled consensus prevailed that my mother looked “just like herself”. This sentiment was always spoken with an air of relief that suggested Irish morticians were sometimes in the habit of altering the appearance of the dead for a laugh, but on this occasion had read the generally melancholy feeling in the room and realised it would be best to make up her face to look as much as possible as she had in life.

Teatime and sympathy: Séamas sits with his sister Orla for lemonade and biscuits in 1989.
Teatime and sympathy: Séamas sits with his sister Orla for lemonade and biscuits in 1989. Photograph:

My memories of the day itself are scattered, but I do remember a system had been put in place to try to marshal the movements of us Wee Ones, who were too young to understand what was going on. Of course, my ebullient run-around ways couldn’t be suppressed forever and, before long, I was wandering free. I was simply too young to grasp that the only thing sadder than a five-year-old crying because his mammy has died is a five-year-old wandering around with a smile on his face because he hasn’t yet understood what that means.

We laugh about it now, but it really is hard for me to imagine the effect I must have had skipping through the throng, appalling each person by thrusting my beaming, 3ft frame in front of them like a chipper little maître d’, with the cheerful inquiry: “Did ye hear Mammy died?”

The solemnity, not to mention the permanence, of my mother’s death was lost on me then, and it would take a while to sell it in a way I really took to heart. Months later, in much the same manner of a man who remembers a packet of Rolos in his coat pocket, I’d straighten my back with delight and perkily ask the nearest larger person when Mammy was coming back, on account of how she’d been dead for ages and was, surely by now, overdue a return.

Mammy was laid to rest in Derry’s Brandywell cemetery, looking down over Derry City’s stadium. Some years later, a fibreglass statue of a paramilitary volunteer was erected a few graves in front of hers, as a fascinating departure from the ambience of angels and urns graveyards typically aim for. Mounted by the INLA – very much the Andrew Ridgeley of Irish republicanism – it was a striking addition. To this day, any time I visit my mother’s grave, it hovers on the edge of my vision like a giant GI Joe, only one who’s about to give a prepared warning to the world’s media. If you were to construct a heavy-handed visual metaphor for how large a shadow the Troubles cast over everything in Northern Ireland during my childhood, it wouldn’t be a bad shout.

In the months that followed, the shock would subside and the slow, rumbling grief would come in successive, parallel waves. The impacts would come to each of us individually and at different speeds and then be magnified by all of the subsequent considerations of everyone else’s grief, cross-bred and multiplied by the 12 of us trying to make sense of it.

My mother wouldn’t be there any more to kiss grazed knees or carry me to bed when I pretended to have fallen asleep in the car or dry my hair with the static force of a hydroelectric dam. She would never cock an eyebrow at the socialist-tinged T-shirts or abstruse electronica of my teens. She would never smile politely at girlfriends she found overfamiliar, or text me to say she loved them the second I got home. Mammy would never send a text message full stop. She would never read an email or live to see the words “website” or “car boot sale” enter a dictionary. Mammy didn’t even live to see Bryan Adams’s (Everything I Do) I Do It for You get knocked off UK No 1, its perch for four months at the end of her life.

It seems blasphemous that my mother’s death even existed in the same reality as those moments that subsequently came to define my youth: taking the long way home so I could listen to Kid A twice, or poring over the lurid covers of horror paperbacks in a newly discovered corner of Foyle Street library. How is my mother’s passing even part of the same universe that gave me the simple pleasures of ice-cream after swimming lessons in William Street baths, or scenting the sun cream on girls’ skin as they daubed polish on their outstretched, nonchalant nails?

My life wasn’t over from that point on. I’d laugh and cry and scream about borrowed jumpers, school fights, bomb scares, playing Zelda, teenage bands, primary school crushes and yet more ice-cream after yet more swimming lessons. I’d just be doing it without her. To some extent, I’d be doing it without a memory of her. The most dramatic moment of my life wasn’t scored by wailing sirens, weeping angels or sad little ukuleles, nimbly plucked on lonely hillsides. Mammy’s death was mostly signalled by tea, sandwiches and an odd little boy in corduroy trousers, announcing it with a smile across his face.

Complete Article HERE!

The Dignified Exit

The Inevitable: Dispatches on the Right to Die

By Elena Saavedra Buckley

AS MEDICAL AND technological advances have made our world safer, it’s become much harder to kill oneself painlessly, even if one intends to. Asphyxiation by carbon monoxide, usually done by inhaling car exhaust in an enclosed garage, has gotten harder as the automobile industry’s emissions levels lower over time. Ovens have followed a similar trend, with natural gas models outplacing those that run on coal. The shift is especially true when it comes to medications. Use of Nembutal, the barbiturate that killed Marilyn Monroe, declined in the second half of the 20th century and was eventually discontinued in the United States, leaving available fewer substances that can cause a nonviolent overdose. (Other lethal medications have multiplied in price, sometimes threefold or more.) For those who desire “rational” suicide — done after consideration rather than, as is more typical, spontaneous despair — options are limited outside uncertain and gory methods. We live more protected lives than we once did, but, in exchange, the ability to end our lives peacefully is kept out of reach, like a bottle of recalled pills.

The subjects in Katie Engelhart’s essential, vulnerable book, The Inevitable: Dispatches on the Right to Die, question these barriers. Since the mid-20th century, conversations on assisted suicide have grown, as laws allowing it have passed around the world. In popular conversation, Engelhart writes, people who use assisted death usually fit an archetype: elderly, secular, white people, with terminal diseases and supportive families, take advantage of rare right-to-die laws soon before their likely natural death. They throw back a lethal cocktail of liquid drugs under the watch of a doctor and their loved ones. They fall asleep, and, within a few hours, their heart stops. “While most reporting about the so-called right to die ends at the margins of the law, there are other stories playing out beyond them,” Engelhart writes. “Didn’t I know that whenever the law falls short, people find a way?”

Engelhart, a former reporter for VICE and NBC News, profiles two rogue doctors and four subjects who seek assisted death in a variety of illicit shades: an elderly British woman who feels she has lived the life she wants; an American woman in her 30s with worsening multiple sclerosis; an American woman sinking into dementia’s abyss; and a 25-year-old Canadian man with complicated, severe depression. Engelhart profiles them as they either seek help with suicide, through mail-order chemicals or services overseas, or challenge the limits of their country’s laws. Engelhart is ever thoughtful; the approach can fall flat during meetings with secondary doctors or interviews with philosophers (summoning more than one description of office shelving), but Engelhart’s main portraits, and her careful relationships with her subjects, powerfully animate her central questions: what is dignity, and what does it mean to die with it?

As she chases dignity’s meaning, Engelhart meets early dead ends. Some of her interviewees brush off the question, saying that dignity amounts to feeling respected, making their own choices, and, mostly, being able to wipe their own asses. (“When someone has to change my diaper, I don’t want to live.”) But if dignity can be understood at an individual level, it is twisted by the systemic factors Engelhart describes that lead to death wishes: the specter of melancholic senior living facilities, unsuccessful mental health treatments, and impossibly expensive health care. The Inevitable is international in scope, but these pressures loom largest in the American medical system. When visiting Brussels, Belgium, Engelhart speaks to Wim Distelmans, an oncologist and euthanasia proponent, about whether assisted death should be offered to more people in the United States. “It’s a developing country,” he tells her. “You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.” A reader wonders, then, what it means to assert dignity within circumstances that do not do the same.

¤

Voluntary euthanasia may appear in Thomas More’s vision of Utopia, but doctors have long struggled to write it into their job descriptions. In 1995, the American Medical Association stated that “[p]hysician-assisted suicide is fundamentally incompatible with the physician’s role as healer,” and the National Hospice and Palliative Care Organization opposes the practice. The membrane between palliative care and assisted suicide is thin, though — in some cases, tending to fading life with pain-relieving drugs functions as a kind of assisted death, albeit a slow one. Engelhart roots this dissonance in the 20th century’s effort “to conceptually transform old age from a natural phase of life into a stage of disease,” she writes, “and, by extension, something to be defeated, rather than embodied or endured.”

Assisted suicide has been legal in Switzerland since 1940, and some other European countries, like Belgium, have allowed it since the 1990s. (Parts of Australia and Canada allow it, too.) Its American history is piecemeal. As health-care prices climbed sharply in the 1970s and ’80s, a string of high-profile cases of young white women on life support drummed up public conversation. Then, in 1994, Oregon became the first state to legalize assisted death. Other states followed Oregon’s strict parameters: a patient must be terminally ill and have six months or less to live, and they must have the mental capacity to make the decision, as determined by a doctor. On their chosen deathbed, a doctor will give them the lethal barbiturate, but they must lift it to their own mouth in a final, performative gesture of agency.

Opponents of assisted death have long argued that the practice will fall down a slippery slope of exploitation. Poor patients and the elderly, critics say, will feel pressured to die rather than rack up medical costs for their families. People with depression will choose it over trying more treatments. Historically, voluntary euthanasia and eugenics attract similar supporters, and today, some disability rights groups warn that the practices are “fatally tangled.” (One doctor Engelhart speaks with wants to create machines that can provide assisted death more easily than drugs; he sheepishly describes one of his coffin-like prototypes as “a little Auschwitzy.”) So far, though, there is no evidence from Oregon or other states that the laws have caused disproportionate deaths in any demographics. In fact, the opposite might be true. Engelhart spoke to doctors who knew of patients who qualified under the laws, and who wanted to die, but who could not afford the drugs. “Poor patients sometimes had to live,” she writes, “while richer patients got to die.”

¤

Like much great narrative journalism, The Inevitable powerfully justifies its form when mapping how people relate to each other outside dominant systems — in this case, how end-of-life care can exist away from, or in opposition to, big medicine. Beyond trickster doctors like Jack Kevorkian — the American pathologist, dubbed “Doctor Death,” who in the 1990s turned assisting suicides into a kind of civil disobedience — barely underground networks have offered assisted death to people who don’t meet the law’s eligibility. One of Engelhart’s subjects, Debra, is a widow in Oregon who does not want to fully succumb to her dementia. She ends her life before that happens with the help of the Final Exit Network, a group of volunteers who instruct the elderly on how to commit suicide and accompany them through it. When she is ready, two volunteers arrive at her house, hug her, and kneel next to her wheelchair while she uses a plastic bag and gas canister to stop her own breathing. Even with its analog methods, this moment feels dignified, closer to what care should look like — especially when put into relief by the police who show up to her door some hours later.

Other narratives are murkier. A woman named Maia, the only main subject from the book who is still alive, speaks with Engelhart while working through the decision to schedule her death at a clinic in Basel, Switzerland, seeking relief from multiple sclerosis. Maia is slowly and painfully approaching paralysis. “I believe the soul travels on and wants to be free from this prison that has become my body,” she wrote in her application to the clinic. Maia felt early, undiagnosed symptoms of her MS in her 20s, but, following the advice of her father, she hoped for the best and declined treatment. Once the debilitation became obvious, she wondered whether those early treatments would have prevented the disease’s severe progression. The future she is left with will require constant assistance and treatments. In the United States, it will send her into poverty. (She unsuccessfully attempts the most American of options: a GoFundMe for medical expenses.) Maia is sure of her plan, but she seems consumed by wondering whether she could have lived a different life or whether she has suffered enough to end the one she has. Even with her Swiss appointment, she closely follows right-to-die bills in the United States. “On an idealistic level,” she tells Engelhart, “I’m obsessed with dying in my own country.”

For Maia, it seems, dying in the United States would be a kind of acknowledgment, an agreement that her country shares responsibility for her distress. The Inevitable is interested in dignity and how people define it, but it does not ask so explicitly whether the state, and the laws it creates, can recognize people’s dignity in the first place. If our systems of governance fail to care for so many — and kill others on death row and in the streets — can they be trusted to control the choice to die? If a “developing country” without universal health care did offer wide access to assisted death, one wonders whether its use could make that country’s ills more obvious, more urgent, less ignorable. When The Inevitable snaps back to the perspectives of its individual subjects, the implications of these political threads can get lost; the perspectives of nonwhite patients, or people who harbor more doubt in the medical system from the get-go, are also mostly absent from the narrative. Still, the book’s brilliance is in how much fertile ground it lays for these questions.

Near the end of The Inevitable, Engelhart profiles Philip Nitschke, an Australian doctor who has become one of the most vocal supporters of the unrestricted right to die. Nitschke founded Exit International, another organization like Final Exit Network. His is far more boundless than others; they sell The Peaceful Pill Handbook (2006) to almost anyone with instructions for safe suicide methods, and Nitschke gives public “DIY death seminars” with his wife’s help. He is at the radical end of the book’s spectrum, yet after the rigid patterns of death barely evaded by Engelhart’s subjects, his beliefs appear risky but benevolently imaginative.

When Nitschke started his career, he only accepted assisted death on a limited scale. But as he met the kind of people who could be in The Inevitable: Dispatches on the Right to Die — a taxi driver with stomach cancer, for one, who died painfully without the legal right to die — these limits dissolved rapidly. What did age have to do with it, really? And, more than that, if physical pain was an acceptable reason to end one’s life, shouldn’t mental pain be, too? Doctors and lawmakers, he came to believe, couldn’t pick and choose. There was simply too much gray area. “Philip came to think that efforts to suppress rational suicide were ‘a sign of an increasingly sick society,’” Katie Engelhart writes. “They were a sign that, maybe, society wasn’t so confident in its reasons for insisting on life.”

Complete Article HERE!

The Books Keeping Me Grounded as I Contemplate Becoming a Care Partner to My Parents

By

My mother was driving home from work one drizzly day at the end of 2019 when she was struck by an oncoming car that had veered into her lane. Her car was totaled but, luckily, she sustained minimal injuries. Still, she was mere months away from retirement and, now, she had to grapple with the effects of a concussion, shoulder pain, and severe anxiety.

It was eventually determined that she would need surgery for her shoulder. But then the pandemic hit and her treatment was delayed.

A year and a half later, she still has shoulder pain and tires easily. She goes to physical therapy three times a week. Sometimes, she has flare-ups and needs cortisone shots. She’s nervous about driving very far.

My father, meanwhile, has been wrestling with chronic depression and anxiety for years (we two are birds of a feather…). In recent years, his hands have developed tremors that have become increasingly worse. Testing has revealed inadequate answers.

Amidst other medical issues, it also emerged that my father was experiencing memory problems. The other month, he was diagnosed with mild cognitive impairment which, in 50% of cases, can grow into full-blown dementia.

I’ve had an interest in end-of-life care for a while now, mostly because of what I observed when my mom was caring for her own father. I’ve written previously about the books I’ve enjoyed that tackle end-of-life care, compassion fatigue, and caregiver burnout. More recently, the topic has become a side niche for me in my journalism work. In a piece that went live on Rewire.org last month, I write about the lack of systemic support for unpaid family caregivers.

All this time, I felt I was preparing for something. After all, I’m 40. My parents are 70.

But as the past two years have brought more challenges — both with their health and with the decisions I was forced to make for my 6-year-old as COVID spread across the world — I realized I wasn’t prepared at all.

So, I turned to books. Because of course I did. That’s what I do. And while I’m still scared of the inevitable shift to come in the next few years, I at least feel more grounded in what it all means, and what options we have.

If you, too, are entering the “sandwich generation,” allow me to share which books were helpful for me.

Being Mortal by Atul Gawande

I actually read this one several years ago, but I’ve found it to be a good one to return to. In it, Gawande contemplates what it means to experience a “good death,” and shows how medical advances have led us to push back against the bounds of mortality in such a way our quality of life in later years is adversely impacted. He then shows that there is another way and that, rather than postponing death, we can enjoy life — until the very end.

Advice for Future Corpses (and Those Who Love Them) by Sallie Tisdale

A fellow Book Rioter recommended this one to me back when I first started to get nervous about my parents’ health. After reading a library copy, I ordered my own copy, and now I’m doing a reread so I can dog-ear pages and take notes. Every time my husband sees the book on the counter, he shakes his head and calls me a morbid weirdo. But this book is a revelation. Written by a practicing Buddhist who also spent a decade working as a nurse in the field of palliative care, Tisdale provides a comforting perspective on whether or not a “good death” actually exists (good for whom?); what you should and should not do, say, and expect from your loved ones in their later years; what you can expect at the different stages of aging; the nature of grief; and more. I may be a morbid weirdo, but at least I’m a morbid weirdo who now feels a little less afraid.

Can’t We Talk About Something More Pleasant? by Roz Chast

I actually ready this one right before my dad received his MCI diagnosis, and I felt as if I were looking into my future. There is the anxious, aging father who eventually slips into dementia. There is the willful, stubborn-as-fuck, aging mother who refuses to ask for help when she needs it. And then there is the daughter — Roz Chast herself — who doesn’t know quite how to handle this sudden shift without completely upending her own life. Beyond the parallels to my own life, I appreciated how this graphic memoir showed a woman pushing back against what is expected of daughters, making decisions that took into account not only the care of her parents but also of herself. Foregoing one’s own care is a trap many unpaid family caregivers fall into.

What We Carry by Maya Shanbhag Lang

My mom and I have always been close…in a slightly codependent way. So I immediately connected to Lang as she described the ways in which she needed her mother — how much she counted on her to be there and support her during hard times — and how disoriented she became when, after becoming a mother herself, things changed. There are a lot of layers to this memoir, but what felt particularly relevant to me were the moments of reflection around her changing relationship to her mother as her mom became swallowed up by Alzheimer’s and the way this informed how she mothered her own daughter. On top of that, threaded throughout the book, was a fable of sorts about a woman who carries her child across a river and, as the waters rise, must decide whether to save herself or her child. By the end, though, Lang begins to see that the question of who to save is not as black and white as it first appeared.

Complete Article HERE!

A matter of life and death, again and again

By Jack Cameron Stanton

FICTION
Should We Stay or Should We Go
Lionel Shriver
Borough Books, $29.99

Is life, no matter its quality, sacrosanct? In 2018, Aurelia Brouwers, a 29-year-old girl, caused controversy by ending her life legally in the Netherlands. Her case was anomalous: she did not suffer from a terminal illness, rather struggled with a history of mental illnesses, suicide attempts, self-harm and psychosis.

Assisted-dying remains a fiercely contested area in global euthanasia laws, belonging to the interdisciplinary branch of ethical discourse known as bioethics, which debates the value of human life. With the advances in modern medical knowledge, the global average life expectancy has increased to 72.6 years, up from 65.3 in 1990, as estimated by the United Nations.

And the transhuman movement, which advocates the research and development of human-enhancement technologies, theorises that near-future breakthroughs will extend human lifespans indefinitely.

In Should We Stay or Should We Go, Lionel Shriver, best known for We Need to Talk about Kevin, confronts the issue of assisted-dying and euthanasia when her protagonists Kay and Cyril Wilkinson propose “that we get to 80 and then commit suicide”. They are not suffering unbearably when they make the decision; in fact, they’re in their mid-50s, and in excellent health. Their reasoning is simple: humans were never meant to live beyond 80, and they ought to die on their own terms, before they succumb to the entropy of their biological clocks on borrowed time.

The novel’s departure point is March 29, 2020 – the day of Kay’s 80th birthday. After the “giddy, mind-racing rush to capitalise on time remaining”, the world has unexpectedly changed. Brexit reignited Cyril’s fierce anti-leave sentiment, and coronavirus turned Britain into a ghost land. As a result, Kay and Cyril appraise the lethal pills before them and begin to soliloquise about death in a corollary of Hamlet’s “to be, or not to be”. Problem is that as octogenarians, they remain in good health, not the mindless or stupefied walking corpses they feared they would become.

From here, Shriver disrupts the narrative with multiple scenarios that imagine what Kay and Cyril do next. Using this non-linear structure, Shriver creates a novelistic thought experiment, a network of possibilities, with each chapter reverting in time to choose a different path.

Kay goes ahead, Cyril backs out, and soon has a stroke that imprisons him inside his own body. Advances in medicine produce a magic pill that reverses ageing and allows people to live at optimal youth indefinitely. Their children, aghast that their parents planned suicide, and had squandered their inheritance, subject them to a cruel assisted-living home. Kay succumbs to dementia, and her family grieves as if she’s already dead.

For a while, banal subplots and dialogue about the burden the old place on Britain’s health system ride the coattails of a clever structural design. Cyril finally gets around to penning his memoirs, in which he writes at length about Brexit, the NHS, and why any responsible person should end their own life before becoming “fiscally ruinous”.

Kay and Cyril die many times, but never die. Each chapter resurrects them at a particular point in the preceding narrative and allows them to choose a different path. The result is that we feel trapped in a time-warp, reliving moments ranging from the banal to the dramatic. There’s something cavalier, even irresponsible, about the idleness with which Kay and Cyril discuss their exit plan, as beholden to a kind of botched utilitarianism, in which their deaths will alleviate the strain on a healthcare system clogged by senescent bed-hogs.

For me, euthanasia or assisted-dying becomes a complex moral dilemma when the person who wants to die is experiencing unceasing, terminal, and/or unbearable pain in life, and wishes a dignified death that involves a physician’s help. Stripped of this urgency, Kay and Cyril seek to end their lives merely to escape middle-class malaise, and this lack of high stakes, combined with a structure that relies on iteration, undermines the perspicuity its protagonists aim to convey.

What’s more, the structure, at first nifty and whimsical, soon wearies, and the result is an uroboric cycle during which every death is hypothetical, every decision temporary.

Should We Stay or Should We Go promises to explore mortality at a time when growing technological capacity to keep people alive has stretched the “sanctity of life” ethic to the verge of collapse. Although the premise compels, Shriver’s novel is weighed down by the snobbish longueurs of two well-off oldies who, despite their fears of death and dying, find their immortality by coming back to life chapter after chapter.

Complete Article HERE!

In ‘The Living Sea of Waking Dreams,’

— Last-ditch medical interventions are their own horror story

Confined to a hospital bed, her 86-year-old body shutting down, her mind “breaking into fragments and receding,” Francie asks a nurse to bring her a contemporary novel. The nurse returns with, of all things, “Sabbath’s Theater,” Philip Roth’s sexually explicit work about an aging, suicidal creep. It’s just one of many indignities visited upon poor Francie in “The Living Sea of Waking Dreams,” Australian writer Richard Flanagan’s latest novel.

Flanagan won the prestigious Booker Prize in 2014 for “The Narrow Road to the Deep North,” an extraordinary novel about Australian POWs during World War II that is unsparing in its considerations of human cruelty. “The Living Sea of Waking Dreams” shares its predecessor’s concerns but little of its power.

A survivor of cancer and the brain-damaging condition hydrocephalus, Francie is back in the hospital when the novel opens. She has “taken a bad turn,” and her condition worsens after she falls and experiences a brain hemorrhage. As Francie’s decline accelerates, her three late-middle-aged children become increasingly determined to keep her alive. They force their mother into last-ditch medical interventions with the complicity of a health-care system Flanagan suggests is more interested in its well-being than that of its patients. Because “The Living Sea of Waking Dreams” is essentially a horror story, their efforts succeed.

Yet this is not Francie’s story. It’s about Anna, the eldest child, only daughter and family narcissist. An architect, Anna is frequently summoned from Sydney to her birthplace in Tasmania by her blue-collar brother Tommy, whom she disdains for being “that most bourgeois of embarrassments: the lower-class relative.”

Her assessments of Francie are even ranker. She looks upon the woman’s “wretched body” as nonhuman, “a carapace of something long ago caught and killed in a spider’s web.” Her reactions to Francie’s scent are equally unkind.

Allowing that her once-strict mother’s “true nature . . . was open, gentle, and loving,” Anna initially wishes for Francie to die so her pain can end. But then, Anna’s ego intervenes. “And precisely because of her shame she saw that henceforth she would have to devote her very being to keeping her mother alive,” Flanagan writes. From there, Anna’s justifications for Francie’s torment pile up like so many medical bills.

Anna has an ally in her youngest brother, Terzo, a businessman who discusses the prolonging of Francie’s life in terms of “victory” and “triumph.” They bully Tommy, whose stuttering they mock and whose poverty they find offensive, into agreeing with them about Francie’s care. “As Terzo put it, with a smile,” Flanagan writes, “they were a board of directors examining a newly acquired corporate takeover.”

Flanagan gets close to something good here, a wicked take on end-of-life care, economic privilege and hubris in the face of death. “The Living Sea of Waking Dreams” can even be viewed as a decent allegory on the climate crisis, which Anna contemplates while scrolling through Instagram, often while on the toilet. In one welcome, Jenny Offill-like moment, Flanagan writes: “How did you adapt to your own murder, wondered Anna as she watched a cat video. Was that what was happening? Were they adapting to their own extinction? Was she?”

If only Flanagan weren’t so obvious about it all. No point in this book is too plain that it can’t be blasted with a spotlight. As Anna watches Australia burn from the narcotizing screen of her phone, her mother vanishes into hallucinations of one-eyed CIA agents and “animals turning into birds and then into plants.” Piece by piece, Anna also begins to fade away. A hand disappears and then a knee, as if they’ve been digitally erased. She feels no pain, and her mobility is unaffected. “But now it had vanished she realised she missed it,” Anna thinks of her invisible knee. “But like the aurochs it was gone. Like the thylacine and the Walkman. Like long sentences. Like smoke-free summers. Gone, never to return.” Like a reader’s patience.

That Anna is unlikable doesn’t really matter, of course. Cold hearts and warped minds make for great literature. What irritates most about Flanagan’s novel is that Anna is more a character than a person. She’s hard to take and harder to believe. Is Anna, in her late 50s, really “shocked” to discover that Francie is more than just a mother but “an adult independent of [her family] and their needs”? Does it really take her so long to realize that postponing Francie’s death is not the same as giving her life? Is she only now understanding that “the more the essential world vanished the more people needed to fixate on the inessential world”? Did she really not know any of this? Did Flanagan?

Complete Article HERE!