At The End of Life (2012)

True Stories about How We Die

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Lee Gutkind, Editor

What should medicine do when it can’t save your life?

The modern healthcare system has become proficient at staving off death with aggressive interventions. And yet, eventually everyone dies—and although most Americans say they would prefer to die peacefully at home, more than half of all deaths take place in hospitals or health care facilities.

At the End of Life tackles this conundrum head on. Featuring twenty-two compelling personal-medical narratives, the collection explores death, dying and palliative care, and highlights current features, flaws and advances in the healthcare system.

Here, a poet and former hospice worker reflects on death’s mysteries; a son wanders the halls of his mother’s nursing home, lost in the small absurdities of the place; a grief counselor struggles with losing his own grandfather; a medical intern traces the origins and meaning of time; a mother anguishes over her decision to turn off her daughter’s life support and allow her organs to be harvested; and a nurse remembers many of her former patients.

These original, compelling personal narratives reveal the inner workings of hospitals, homes and hospices where patients, their doctors and their loved ones all battle to hang on—and to let go.

DJE: These are remarkable vignettes that are really worth reading.  To savor them, they might best be read in small doses.

Wave (2013)

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by Sonali Deraniyagala

from Amazon: “On the morning of December 26, 2004, on the southern coast of Sri Lanka, Sonali Deraniyagala lost her parents, her husband, and her two young sons in the tsunami she miraculously survived. In this brave and searingly frank memoir, she describes those first horrifying moments and her long journey since. She has written an engrossing, unsentimental, beautifully poised account: as she struggles through the first months following the tragedy, furiously clenched against a reality that she cannot face and cannot deny; and then, over the ensuing years, as she emerges reluctantly, slowly allowing her memory to take her back through the rich and joyous life she’s mourning, from her family’s home in London, to the birth of her children, to the year she met her English husband at Cambridge, to her childhood in Colombo; all the while learning the difficult balance between the almost unbearable reminders of her loss and the need to keep her family, somehow, still alive within her.”

Note:  This is a harrowing book to read.  It gives new meaning to G.M. Hopkins’ lines “No worst, there is none. Pitched past pitch of grief,/More pangs will, schooled at forepangs, wilder wring.”

If you have courage…read Wave.

The Presence (2007)

by Dannie Abse (Welsh-Jewish poet-physician b. 1923)

from the Guardian: “There are no chapters in this book, just dates. It is the story of one man's year as he struggles to make sense of a life without his wife of more than 50 years. The book opens with the obituary of Joan Abse, killed instantly in a car crash in June 2005. Throughout the book her husband will recall countless details of the accident that took "in one unpredictable moment, my lover, my ally, and my friend". You yearn for the respite of a chapter break, but there are none, just as there is "no happy ending". The reader has to come to terms with that, as does Abse, this famous poet and doctor, who carries on giving readings and attempting to watch football but whose mind is always occupied in recollection. There is some humour, and inconsequential details, practicalities and outbursts. Accounts of buying trousers, walking in the park and seeing friends are interspersed with memories of Joan and others; and with poems, anecdotes and stories which seem to appear in random order, as in a commonplace book, but which beautifully, painfully convey the intertwining filaments of two lives.”

Joan Mercer Abse

Note:  This was a moving and eloquent journal starting a few months after Abse’s wife Joan’s death in a motor vehicle accident.  Each of us grieves in her own way, and this is another piece to the puzzle. Reading The Presence is like having a conversation with an insightful human being who is a word-smith and a knowledgeable physician-healer.

Brain on Fire (2012)

This is an important and harrowing book  Here is a review from NPR.

It's a cold March night in New York, and journalist Susannah Cahalan is watching PBS with her boyfriend, trying to relax after a difficult day at work. He falls asleep, and wakes up moments later to find her having a seizure straight out of The Exorcist. "My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened," Cahalan writes. "I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth."

It's hard to imagine a scenario more nightmarish, but for Cahalan the worst was yet to come. In 2009, the New York Post reporter, then 24, was hospitalized after — there's really no other way to put it — losing her mind. In addition to the violent seizures, she was wracked by terrifying hallucinations, intense mood swings, insomnia and fierce paranoia. Cahalan spent a month in the hospital, barely recognizable to her friends and family, before doctors diagnosed her with a rare autoimmune disorder. "Her brain is on fire," one doctor tells her family. "Her brain is under attack by her own body."

Cahalan, who has since recovered, remembers almost nothing about her monthlong hospitalization — it's a merciful kind of amnesia that most people, faced with the same illness, would embrace. But the best reporters never stop asking questions, and Cahalan is no exception. In Brain on Fire, the journalist reconstructs — through hospital security videotapes and interviews with her friends, family and the doctors who finally managed to save her life — her hellish experience as a victim of anti-NMDA receptor encephalitis. The result is a kind of anti-memoir, an out-of-body personal account of a young woman's fight to survive one of the cruelest diseases imaginable. And on every level, it's remarkable.

The best journalists prize distance and objectivity, so it's not surprising that the most difficult subject for a news writer is probably herself. And although she's young, Cahalan belongs firmly to the old school of reporters — she writes with an incredible sense of toughness and a dogged refusal to stop digging into her past, even when it profoundly hurts. One of the most moving moments in Brain on Fire comes when Cahalan, preparing a New York Post article about her illness, watches videos of herself in the hospital. She's horrified, but finds that she can't look away. "I was outrageously skinny. Crazed. Angry," she writes. "I had the intense urge to grab the videos and burn them or at least hide them away, safe from view."

But she doesn't, and she barely flinches when her loved ones tell her about the paranoid delusions that held her firmly in their grasp for several weeks. There's no vanity in Brain on Fire — Cahalan recounts obsessively searching her boyfriend's email for signs that he was cheating on her (he wasn't) and loudly insisting to hospital workers that her father had killed his wife (she was alive). Cahalan is nothing if not tenacious, and she perfectly tempers her brutal honesty with compassion and something like vulnerability.

It's indisputable that Cahalan is a gifted reporter, and Brain on Fire is a stunningly brave book. But even more than that, she's a naturally talented prose stylist — whip-smart but always unpretentious — and it's nearly impossible to stop reading her, even in the book's most painful passages. Reflecting on finding a piece of jewelry she'd lost during her illness, she writes, "Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly."

Brain on Fire comes from a place of intense pain and unthinkable isolation, but finds redemption in Cahalan's unflagging, defiant toughness. It's an unexpected gift of a book from one of America's most courageous young journalists. (NPR.org)

A World of Hurt (2013)

This important book should be read by all prescribing physicians and all patients taking chronic opioid therapy.  A companion book is Barry Meier's "Pain Killer:  A Wonder Drug's Trail of Addiction and Death."

"A World of Hurt: Fixing Pain Medicine's Biggest Mistake” explores the untold part of the prescription painkiller story – growing evidence that these drugs, along with causing an epidemic of abuse, are often ineffective in treating long-term pain and are harming patients.

Written by Barry Meier, an award-winning reporter for the Times, this new e-book also examines an unfolding medical revolution that will change the thinking of patients and their families. A decade ago, drug companies and medical experts launched a “War on Pain” that promoted the widespread use of powerful narcotic painkillers for common conditions such as back pain, headaches and fibromyalgia. Specialists claimed that a “bright line” separated the drugs’ benefits for patients from their dangers when abused on the street by young people and others.

Today, Meier writes, experts – including some who once promoted the drugs – believe that the opioid boom “ranks among medicine’s biggest mistakes". Recent studies have tied long-term use of these drugs, particularly at high doses, to addiction, dependence, reduced sexual drive, lethargy and other problems. Based on stories of researchers, patients and others, “A World of Hurt” highlights how treating pain differently can benefit both pain patients and the public's health.

“The promise that high-powered drugs could provide a cure-all – the key to winning the ‘War on Pain’ – was an empty one,” Meier writes.

"A World of Hurt" is published by The New York Times and Vook.  It is available in Kindle format only for $1.99 and is of amazing value.

Rules for Old Men Waiting (2006)

A brief, lyrical novel with a powerful emotional charge, Rules for Old Men Waiting is about three wars of the twentieth century, an ever-deepening marriage and three personal encounters with death. In a house on the Cape “older than the Republic,” Robert MacIver, a historian who long ago played rugby for Scotland, creates a list of rules by which to live out his last days. The most important rule, to “tell a story to its end,” spurs the old Scot on to invent a strange and gripping tale of men in the trenches of the First World War...
This invented tale of the Great War prompts MacIver’s own memories of his role in World War II and of Vietnam, where his son, David served. Both the stories and the memories alike are lit by the vivid presence of Margaret, his wife. As Hearts and Minds director Peter Davis writes, “Pouncey has wrought an almost inconceivable amount of beauty from pain, loss, and war, and I think he has been able to do this because every page is imbued with the love story at the heart of his astonishing novel.”
From GoodReads. 

In some ways, McKeever and his son reminded me of Osler and his son, Revere.  This is a moving book about an old man's losses and the ways he faces his impending death.

Until I Say Goodbye (2013)

From Amazon: Susan Spencer-Wendel’s Until I Say Good-Bye: My Year of Living with Joy is a moving and inspirational memoir by a woman who makes the most of her final days after discovering she has amyotrophic lateral sclerosis (ALS).
After Spencer-Wendel, a celebrated journalist at the Palm Beach Post, learns of her diagnosis of ALS, more commonly known as Lou Gehrig’s disease, she embarks on several adventures, traveling toseveral countries and sharing special experiences with loved ones. One trip takes Spencer-Wendel and her fourteen-year-old daughter, Marina, to New York City’s Kleinfeld’s Bridal to shop for Marina’s future wedding dress—an occasion that Susan knows she will never see.
Co-written with Bret Witter, Until I Say Good-Bye is Spencer-Wendel’s account of living a full life with humor, courage, and love, but also accepting death with grace and dignity. It’s a celebration of life, a look into the face of death, and the effort we must make to show the people that we love and care about how very much they mean to us.

While this description is a bit "over the top,"  the book is amazing and well-written.  Spencer-Wendel's story is captivating, and her spirit is impressive.  If one is interested in ALS, her book is a "keeper."A great introduction to the topic, in addition.

Obituary, NY Times.

Susan Spencer-Wendel, a former newspaper reporter who wrote a best-selling memoir about living life to the fullest after learning she had an incurable muscle-wasting disease — and wrote most of it on a smartphone with her right thumb — died on Wednesday, June 4, 2014 at her home in West Palm Beach, Fla. She was 47.

Open Heart by Elie Wiesel

This is a short book, a pensee, really.  Still, it is well worth reading.  Alexandra Popoff's review on Good Reads summarizes my thoughts: "“Open Heart” is a memoir of great emotional power, akin to Wiesel’s novel Night. Both works are written with a poetic eloquence, but while his first novel conveys humanity’s darkest experiences, the memoir expresses his acceptance of life. Open Heart takes the reader to a world filled with love and tells about the brightest experiences –– faith, survival, and human bondage."
Should you read Open Heart there are moments that will inspire.