You’re probably going to think a free memoir isn’t much—not interesting, not well-written, not worth bothering with. I picked it up at a conference noYou’re probably going to think a free memoir isn’t much—not interesting, not well-written, not worth bothering with. I picked it up at a conference not knowing it was a memoir, actually. It sat around my house cluttering things until I decided to throw it out—but not until I glanced through it first.
Well, much later the same day it is all revolving in my head, leaving me feeling wonder, awe, thunderstruck surprise, joy, awe again. This is one helluva story, a creation story. a bildungsroman, an odyssey. And our hero—yes, emphatically, hero—emerges an adult, a moral adult caring about his fellow humans. His fellow humans care about him as well.
He is not bitter, or cynical, or any one of the things that lesser people may experience along the dark and scary road that can be our lives. His life surely trumps that of most of us, simply in terms of size: he is 6’9” and was down to 145 pounds at the height of his death-defying illness.
Since he tell us of his illness in the first pages, I am not giving away the story. No. That honor is still reserved for him because the bad things that happen are not really, ever, the story. It is what we did after that. And what Jim Gilliam did was to grab every bit of life he had left and use it.
By then he had discovered that God was not to be found in some cold pile of cathedral rocks somewhere or in the thundering denunciations of false prophets on TV but within all of us, most especially when we are together, caring for one another. He calls that search and finding connection a holy experience, and he is not wrong.
Gilliam is a technologist, and as such, one would expect his skills would not lie in writing. But this book, even if he had help, is beautifully done, full of moment, real insight, propulsion, and discovery. In a way, it is the tale of every man, though not every man has gotten there yet.
He will describe the moment he discovers falseness in the lessons taught him by his religious teachers, the moment the world begins to unravel around his family, the moment he discovers he must, no matter what, follow his own path to understanding.
What is so appealing about this journey is that Gilliam is guileless. He is not trying to teach us anything. He is explaining his journey, what he saw, and tells us what he thinks about what he saw. It is utterly fascinating because he has so much understanding of the events in his life.
Gilliam’s father and mother both were math majors and computer scientists of sorts in the computer field's early days. For business reasons his father lost an opportunity to develop one of the first software programs for personal computers at IBM and consequently turned to fundamentalist religion.
Gilliam grew up steeped in the language and an understanding of what computers could do, but was restricted from taking full advantage by the religiosity of his parents. He himself was very good at thinking like a scientist and took advanced classes while in high school so that he could enter college as a sophomore.
The hill separating him from his intellectual development became steeper just as he was finishing high school. I am not going to spoil the story arc. At no point did this 180-page small format paperback every become weighted down with intent or causation. We just have the clean progression of one boy into man into—that word again—hero.
His understanding that there is something godly in human connection, in striving together for good, is exactly what people discover in moments of human happiness and fulfillment. While he rejected the morality in which he was raised, as I did, I wonder if somehow it wasn’t good preparation for recognizing morality when he saw it, finally.
Personally, I can’t think of a more absorbing, unputdownable story. Get it if you can. It is a wonderful, thought-provoking personal history....more
The spectacular public service reporting Sam Quinones does in this nonfiction is so detailed and many-faceted that it left me feeling a little voyeuriThe spectacular public service reporting Sam Quinones does in this nonfiction is so detailed and many-faceted that it left me feeling a little voyeuristic, not having been visited by the scourge of opioid addiction myself. Good lord, I kept thinking, so this is what we are dealing with. I knew something was different, I just didn’t have any conception of the size, scope, method, and means of this problem.
Quinones starts his story in the early 1980s when the first rancho Xalisco marketers came up from Mexico with an innovative method for just-in-time drive-by selling of drugs to rich white kids in the suburbs. They explicitly avoided cities and black people because they admitted they were afraid of them, their violence and their gang activity. Besides, the thinking went, blacks never had any money. They’d just as soon steal from a dealer as pay him. The white kids had money and wanted convenience above all.
At almost the same time, and a cultural habitat away from small-time drug dealers of black tar heroin from Mexico, a drug company owned by the Sackler medical empire released an opiate derivative in pill form meant to alleviate pain. Early on, it is possible that creators, marketers, and prescribers of this plague did not know what they had unleashed. But within a couple of years, it is difficult to avoid the conclusion that great numbers of people within and without the company sold the product in full knowledge of its wicked potency and addictive properties.
Quinones has been researching and reporting on this topic for a couple of decades, and lived in Mexico for ten years, observing the supply-side. Before having a comprehensive understanding of the subject, Quinones thought the heroin problem began with U.S. demand for drugs. After researching the situation in the heartland United States, he has decided that our problem now with heroin and fentanyl overdoses was caused paradoxically by a huge supply of opioid pills, prescribed by doctors in legal clinics, and condoned at every level of society and government in our country.
The story Quinones shares is un-put-down-able and truly remarkable, particularly his discussion of the marketing techniques for black tar heroin used by the small farmer-seller systems first set up by residents of Xalisco. Their method of growing-packaging-selling expansion into the heartland of America should make us sit up and pay attention. Ground zero for the meltdown of middle America is identified by Quinones as Portsmouth, Ohio, a middle class town at the center of a web of major cities like Cincinnati, Cleveland, Louisville, Indianapolis, Pittsburgh. The first known vector of the opioid infection was an unscrupulous doctor who overprescribed pills, knowing they were addicting his patients. Aided by ordinary well-meaning doctors who listened to marketing spiels by the drug makers, and who believed the pills to be non-addictive, the infection spread rapidly. Quinones tells the tale as it unfolded, involving Medicaid scams and cross-state purchases and sales.
What Quinones tells us gives us lessons for many other supply-side problems (marijuana? guns?) we may face in our society, now or in the future. When asked in an interview why restrictions on Class A prescription pills or opiates of any sort would produce the better outcomes, Quinones points out that when prohibited liquor was once again allowed to be sold openly, it was classified as to strength and sold differently. He warns that we are rushing to sales of marijuana with potency levels unknown fifty years ago and may wish we’d instituted some restrictions or controls before it becomes socially acceptable.
This nonfiction is dispassionate enough to allow us time to adjust our thinking around the problem of young people—entire families, really—losing their place in a productive society, with almost no way out. Now, with the recognition of the problem being forced upon our politicians, teachers, medical personnel, and law-enforcement officers, some changes are being instituted which may help after the fact of addiction, never a good time to try and solve a problem. With discussion and buy-in by ordinary citizens it may be possible to attack this problem before it begins.
There are at least seven interviews with Quinones available free on Soundcloud, ranging in length from 15 minutes or so to an hour and a half. You have to hear some of these stories. It's mind-blowing. I listened to audio version, very ably read by Neil Hellegers, and produced by Bloomsbury. It is a must-read, must-listen....more
The idea was just to see what the psychiatrists had done with the concept of viewing DJT from afar and telling us what they could see. I was skepticalThe idea was just to see what the psychiatrists had done with the concept of viewing DJT from afar and telling us what they could see. I was skeptical, truthfully, and happen to agree with the Goldwater Rule: that mental health professionals should not make statements about the mental health of people they have not examined. But an introductory essay by Robert Jay Lifton was so smart, measured, and upfront about how their work could be considered political that I thought I’d read a little more.
Lifton, a leading psychohistorian, points out that psychiatrists should have a role in not normalizing evil as in the case of Hilter’s regime, normalizing the use of a nuclear weapon in WWII, or normalizing the enhanced interrogation techniques of the Iraq War. He thinks that psychiatrists have a moral obligation to use their skills to benefit society. He says that professional psychiatric organizations don’t often discuss that professional ethics should also include
“who we work for and with, and how our work either affirms or questions the directions of the larger society. And, in our present situation, how we deal with the malignant normality that faces us.”
In “Unbridled and Extreme Present Hedonism” Philip Zimbardo and Rosemary Sword detail classic symptoms of the narcissistic personality disorder and pair recorded instances of DJT’s speeches, his tweets, his on-the-record remarks with reporters, biographers, and ghost writers. The authors are not using private privileged medical information to frame someone. They are taking the public persona of an individual who claims to be telling the truth and are showing parallels to a pathological narcissism.
Craig Malkin does something similar in “Pathological Narcissism and Politics.” If at one time the citizenry expected they were observing an individual who appeared to be joking about the extreme positions he consistently takes, I doubt we feel the same way after a year of observing his continued positions and behaviors.
In “Sociopathy,” Lance Does explains that “the failure of normal empathy is central to sociopathy, which is marked by an absence of guilt, intentional manipulation, and controlling or even sadistically harming others for personal power or gratification.” Here we must ask ourselves if what we are observing of the man is actually the man or some funhouse mirror reproduction of the man. Hard as it is to believe that someone with such a severe deficiency could get as far as he did, we have to admit there were people along the way, DJT’s ‘friend’ the real estate magnate Steve Wynn for one, who said not to trust him.
The mental health professionals whose essays were published in Part 2 feel a ‘duty to warn’ the country about the possible need to replace DJT, based on their understanding of the demands of the job he has undertaken and his mental capacity. Leonard Glass takes on this question directly in his essay, “Should Psychiatrists Refrain from Commenting on Trump’s Psychology?” Glass believes that “a professionally informed perspective” can be useful for citizenry so they may judge the man and the press about him.
Even mental health professionals can exhibit bias, Glass tells us, but professionals make extra effort to recognize and account for said bias, if only to preserve their own reputations. Glass says we can’t know if DJT knows what he says is demonstrably untrue or not. What we do know is that he cannot recognize having been wrong, nor does he appear able to learn from the experience so that he does not repeat the untruth or failure another day.
Not all the essays were as measured as the ones cited above. Ones I thought could have been left out were those by DJT biographer Tony Schwartz (The Art of the Deal), and one by Gail Sheehy who, however admirable an author and journalist, is not a psychiatrist. In addition, Diane Jhueck in “A Clinical Case for the Dangerousness of Donald J Trump” says DJT “should be of lower risk to violence than the average citizen…[he is] supposed to be our protector, and he is unwell and harmful.” I am not sure risk of violence was on the ballot. If anyone is to blame by those lights, it is the Republican Party, who allowed DJT to be primaried.
The point is that indications of unfitness to serve may not appear until after a candidate is in office. If our government is to stand the test of leadership, we must rely on heroic bureaucrats who still have jobs to place obstacles in the way of business as usual, challenge their superiors at every step, and raise the specter of unfitness. When Howard Covitz begins to raise the notion of conscience within the context of “Health, Risk, and The Duty to Protect the Community,” I honestly thought he was going to speak about the duty of bureaucrats and psychiatrists to speak out about aberrant behaviors.
Actually, Covitz was asking if DJT has a conscience. Somehow I don’t feel we distant observers of the DJT phenomenon, even those with medical degrees, can reasonably be expected to answer that question. In Part 3 the essays try to explain what having a person like Trump in the WH means for trauma, anxiety, and feelings of abuse in the population at large. Again, I am not sure this should be the focus of the mental health professionals’ ‘duty to warn.’ If a major incident were handled badly by this president, they can say they made their fears known through this volume....more
I believe this is the first time I have been able to read something by Don DeLillo. I’ve tried in the past, not recently. This is a play, his third, wI believe this is the first time I have been able to read something by Don DeLillo. I’ve tried in the past, not recently. This is a play, his third, with four characters. Staging is minimal, consisting of chairs on the stage. Set changes are made by lighting, by who is on stage, by clothing changes for one character who is in a wheelchair.
He touches, in practically so many words, the big themes: life, death, familial and sexual love, time, compassion, generosity, jealousy, resentment, desire, beauty. A man, a painter, suffers one, then two, massive strokes. His family, such as it is, gathers.
They discuss him. But mostly they discuss themselves, their needs, wants, desires. He has a second wife, much younger. She focuses on the painter, but it is her love, in the end, that she wants to preserve. They discuss what is fair treatment, what is right and what is good, now, about his life. How long should it be preserved? He dies.
The spare dry air of the southwestern desert plains is clear in a few short sentences:
ALEX I’m just here. In winter the sharp-shinned hawk comes down to the scrub. I can sit and watch a hawk in a tree for unnumbered hours. I’m on his time. He don’t move, I don’t move. I drive to the site and stay four five days at a time. Work and sweat. Talk Spanish to my crew.
That was before, before the strokes. Time grows short, and it is almost always time for bed. What is the good, the right, the fair thing to do?
Masterly in its control, this short play condenses a lot of experience into an hour or so, without giving us any sense that the answer given here finishes the debate. It is a moment, in a wide open plain, when the sun slowly sinks into the west and the Love-Lies-Bleeding evokes color, suffering, mystery. “That’s what being in the world means. At times we suffer.”...more
Many Americans, even those who have never lived in New York City, have heard of Bellevue Hospital, certainly of some patients, and probably some of itMany Americans, even those who have never lived in New York City, have heard of Bellevue Hospital, certainly of some patients, and probably some of its doctors. Its storied history captures our imagination: it has fearlessly and insistently treated epidemics for centuries, as well as the widest range of disease in our nation’s largest city. For most of its history, Bellevue was a teaching hospital associated with two IV League medical schools, Columbia and Cornell, along with that of New York University. In 1966, Columbia and Cornell turned over their commitment to NYU, who produced distinguished physicians trained on some of the world's most difficult and unusual cases.
Land situated on the banks of the East River, about 3 miles from downtown Manhattan, called Bel-Vue, was leased in 1795 to serve as a hospital for those afflicted with yellow fever. It could be reached by boat, on horseback, or by carriage. The location meant one could enjoy cooling breezes and yet be far enough away from the city to avoid spreading infection. Ever since that time, Bellevue has served as a public hospital open to handle the contagious cases for which there is no cure.
"I don’t think there is a disease in Osler’s Textbook of Medicine that I didn’t see," said Bellevue medical intern Dr. Connie Guion in 1916.
Bellevue was the center of the AIDS epidemic in New York beginning in the 1980 and in 1990 Bellevue’s Infectious Disease Specialist Dr. Fred Valentine was instrumental in finding a cocktail of drugs that would keep the infection from progressing. Most recently in 2014, Dr. Craig Spencer, a volunteer with Doctors without Borders, arrived in Bellevue to be treated for Ebola, New York’s only Ebola patient. Aggressive treatment and early diagnosis helped to assure his survival, and he was released three weeks later.
The story of Bellevue is in many ways the story of medicine in the United States, plagued by lack of understanding of the role of sanitation in perpetuating disease, and discovering how lack of family or opportunities might lead to poverty, madness, and despair. Almost from the start, Bellevue had patients unable to pay for their care or explain their malady, and yet they could not be turned away. It has always been a refuge for those who had no where else to go: the homeless, the indigent, the immigrant. Today Whites rank last in ‘patient race.’
Bellevue not only handles disease, but has always handled catastrophic injuries from the city and environs. Oshinsky describes the aftermath of the 1863 Conscription Act riots, riots which began because the poor were drafted to serve in the Union army: the city erupted in mob violence, poor on rich, white on black, native on immigrant, Catholic on Protestant. More than one hundred died, and injuries were grievous.
"This is war zone medicine," a Bellevue emergency room doctor observed in 1990. "You'll never go anywhere in the world and see something we haven't seen here."
In 2001 Bellevue ramped up to take victims of the World Trade Center attack, only to discover an unusual sense of helplessness when few treatable injuries resulted from the incident.
Oshinsky is careful not to whitewash Bellevue’s history. His descriptions can be shocking in what they tell us of conditions there throughout the years. Never particularly well-funded, this public hospital was at the mercy of state budgets and political jockeying, and yet it attracted outsized medical talent by dint of its size, location, and affiliation. The worst bits--doctors operating before antibiotics or anesthetics, or psychotic homeless camping in unused closets—cannot keep the reader from finishing this read in absolute awe of the place.
Bellevue has been rebuilt several times, the latest ribbon-cutting in 1973 after two decades of construction to the tune of $200 million. Twenty-five floors for patients, each an acre or more in size, with stunning views of the river or the Manhattan skyline. Twenty elevators service the space. An I.M. Pei (Pei Cobb & Fried) -designed atrium connecting the old buildings with the new was completed in 2005.
Bellevue has had famous patients (including exposé-writing journalist Nellie Bly), and famous doctors (Dr. Andre Frederic Cournand and Dr. Dickinson Richards won the 1956 Nobel Prize for their work on cardiac catheterization). The ambidextrous surgeon Dr. Valentine Mott "performed more of the great operations" at Bellevue "than any man living," in the words of Sir Ashley Cooper, England's leading surgeon at the end of the eighteenth century.
Any day at Bellevue is positively epic in scope, novelistic, operatic even. When Oshinsky talks about NYC's Office of Medical Examiner being headquartered at Bellevue in the early part of the twentieth century and managed by Bellevue's chief pathologist, the powerful combination of politics, criminality, medicine, and forensics feels explosive. This is Life writ large, in all its manifestations, and Death, likewise. It is a gigantic, voracious story.
For those interested in the history of medicine, this is a must-read. The heroic pieces of the story are difficult to resist. David Oshinsky won the 2006 Pulitzer Prize for History for Polio: An American Story and knows how to tell a big story. There can't be that many who could do what he has done with this magnificent effort. Published in 2016 by Doubleday. Photographs on my blog, and in the finished copy of this book....more
Okay, I know a lot of my GR friends have read many of the end-of-life discussions that have been popular these past couple years, but this one is a liOkay, I know a lot of my GR friends have read many of the end-of-life discussions that have been popular these past couple years, but this one is a little different. It comes at the discussion from a different angle, and it is an angle I have not seen well-articulated, certainly not by a doctor.
For one thing, it is intensely personal, especially in the beginning. Overton claims to be an introvert, but she does an awful a lot of reaching out in this book. I laughed aloud at one joke she told on herself:
At her nursery school, they often played musical chairs, “which I loathed and which may have scarred me for life. I still worry about adequate seating. Usually some poor kid who was not paying attention got stuck without a chair. Then he stood awkwardly and felt blazingly stupid while everyone else sat comfortably and looked smug. It was a terrible game.”
It is hard not to like this woman flinching yet at a child’s game. But, in a way, this book is about paying attention so you can lie as comfortably as possible on your own deathbed.
As a doctor, Overton has the viewpoint, motives, and reaction to incentives of a doctor. But here she is talking about the health care system and why it doesn’t seem to work for everyone (according to statistics, we might say anyone) in this country. I have never personally seen a doctor question in detail the incentives of the system, but Overton does here. She is very thought-provoking, particularly because she doesn’t give us easy answers. She acknowledges the questions, and asks us to do the same.
”The last six months of life accounted for roughly twenty-five percent of our Medicare spending….We try really hard to revive the people least likely to benefit….doctors often operate to fix something that will not save a dying patient, and in doing so avoid the difficult conversation with patients and caregivers about their prognosis and what they want.”
So, it is not so different from Atul Gawande’s Being Mortal, except that she gives a little responsibility to doctors, many of whom are not trained nor equipped for this conversation.
If a person with good health insurance and a terminal disease is in the hospital, is there any reason to limit treatment? She suggests that a for-profit private system of healthcare may not give us the kind of incentives, treatments, and quality of life (or quality of death) we desire.
”I find the concept of for-profit hospitals appalling. There’s an inherent misalignment of motives in the “business” of medicine. Physicians have a moral and financial incentive to provide excessive care to people who can pay for it as long as they have a heartbeat.”
She interleaves her narrative about taking a three-part post-graduate course at Harvard on hospital administration with the declining health of her father and her mother, and with experiences she is having in the hospital. Mostly she wants to share her grief, her expertise, her thinking, and her care. She seems the best kind of friend to talk with about end-of-life issues.
Her father had urged on her the need for preparation, and attention to these matters. He managed very well, until his cancer diagnosis. After many treatments meant to extend his life rather than cure his cancer, things got grimmer. He decided he’d had enough, and his preparation meant his family did not have a hard time of it.
Overton’s mother was a different story, and many of you will recognize the more lingering death of a dementia patient. However, even this wasn’t as painful as some of us experience, due to that planning again. The real problem comes when someone has no family to help, as is the case with many patients Overton sees in the hospital at the last stages of their lives, treated callously by an ever-changing roster of medical care personnel, and unable to make clear decisions.
I find it fruitful to hear the experiences of a doctor, and note she says “Personally, I don’t want to live into my nineties.” Her recommendation is that we do not wait on thinking about these things because life is fragile, and you don’t want to be one of the 45% of patients without advanced directives. Your life, in that case, would no longer be your own.
Totally inappropriately, I am adding a note that Overton introduced me to the Dunning-Kruger effect, which is something I thought I'd invented, frankly. It is the notion that incompetent folks may be too incompetent to know how incompetent they are. It is a very useful construct, particularly in these times....more
In light of Elaine's review, I rewrote my initial snarky take on this novel and posted to my blog. To get full enjoyment from this novel, I urge you tIn light of Elaine's review, I rewrote my initial snarky take on this novel and posted to my blog. To get full enjoyment from this novel, I urge you to see what a reread will do for you.
Below is my original review. ---------------------
This short novel feels too long. An anthropologist, Sofia, quits working on her PhD ostensibly to care for her mother, who is unable to walk. No explanation can be found for the mother’s malady so mother and daughter travel to Spain in hopes a specialist there may be able to elicit a cure.
Long-listed for the Man Booker Prize, this novel comes after a long history of successful poetry, novels, and screenplays by Levy, so we are primed to find it praiseworthy. And it is, but she very nearly tips us into the deep, endlessly cycling the trauma of caring for someone apparently suffering a psychosomatic illness.
There is something we are meant to pay attention to: the notion that some people would never consider doing things that are not to their own advantage. The idea arises again and again in the course of the novel, first explicitly stated when the daughter visits her estranged and happily remarried father to ask for financial assistance or, at the very least, moral support for her efforts to care for his first wife. He refuses, and his new wife snorts with derision that he would consider doing any thing not to his advantage.
Women—wives, mothers, daughters, sisters--often do things not strictly in their best interests. They do it out of love, usually, or say they do. But when one is the head of one’s own household, one is responsible for oneself—to oneself—to manage, to persist, to succeed. [Truthfully, and this is completely unrelated to the book, I know a woman who takes care of herself before everyone else and she is one pain in the caborum.]
(view spoiler)[ Near the end of the novel Sofia tells her mother that she must start doing things that are to her advantage and take charge of her life. Her mother promises to try. Sofia wants her to because she wants to do the same. She wants to return to school and finish her PhD. I suppose it took years in England, a month in Spain, and a visit to the estranged ex-father in Greece to figure it all out, but it seemed like the long way ‘round to me. (hide spoiler)]
There is more in this novel: a kind of forbidden love with a luscious, unstable blond of German descent and a lustful affair with the tent supervisor for jelly-fish stings. There are fabulous white-white sheets (must get some of those), blue embroidery thread that spells out a misunderstood and potentially dangerous message, and a leather-booted horse trainer. There is a doctor of the psyche and his sexy Sunny daughter, to say nothing of a pregnant white cat and a chained dog who howls whether or not he is leashed. It all has the tone of a late-adolescent fling about it. Good for some…
There is nothing wrong with a little fun in the sun—I feel like I missed my beach getaway this year so may sound a little dour about the descriptions of daily swimming and tan lines. Maybe it all could have been said in a poem, or a screenplay that features a stage covered in dunes with a backdrop of bluest ocean and a sliver of sky. The claustrophobia of that setting would mirror how I felt revolving in the confusion of Sofia’s mind. When finally the doctor tells Sophia, “Your confusion is willful,” we echo his diagnosis and frustration.
There is a twist at the end which will thrill some readers. Being who I am, however, it didn’t surprise me. But that’s just my sour nature coming out. I have only read a couple Booker Long List nominees so far, but I guess this wouldn’t be at the top of my list. ...more
10/27/17 The most remarkable discussion of this book takes place between Atul Gawande and Kristin Tippett in the 10/26/17 podcast posted on the OnBein10/27/17 The most remarkable discussion of this book takes place between Atul Gawande and Kristin Tippett in the 10/26/17 podcast posted on the OnBeing website. In the discussion we learn that Gawande went to medicine through politics which may not surprise some of you. I had a radical insight as I listened: that doctors, by oath, are meant to provide life-giving care to rich and poor alike, without discrimination. Does that lead almost directly to the discussion about whether healthcare is a right? You would think doctors, in that case, would be liberal to a person. That they are not means there is a skew in the process somewhere--possibly in the numbers of doctors the AMA allows to be certified. ------------------------------
"The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror."
My great aunt lived to be 102 years old. She would often say, looking at the younger generations, "It’s wonderful to get old." Gawande touches on this in his memoir chronicling the death of his father and in his discussion of dying well. Older folks have more moments they classify as happy than do younger folks. Oldsters generally experience less anxiety, too, perhaps from having “seen it all before,” but perhaps also because they know bad times do pass. Usually.
I still think my great aunt was being just a little facetious, since the rest of Gawande’s book tells us pretty explicitly that old age is not for wimps. In fact, as Elizabeth Gilbert suggested in her novel The Signature of All Things, we do better when we turn towards “the great changes that life brings” rather than turn our wills away. Gawande tells us how it is possible in some cases to choose less treatment rather than more when faced with life-threatening illness and experience a better quality of life in our final days.
This is pretty grim stuff but Gawande is graceful, as graceful as he can be when the choices are so limited and so frankly horrible. When a loved one (or we ourselves) must make choices, it is wise, he counsels, to ask ourselves a few questions: What do we fear most? What do we want most to be able to do? What can/can’t we live without? What will we sacrifice so that we can accomplish what it is we want? Our choices may change as circumstances change, so one has to revisit occasionally, to make sure we (and our family and our doctors) are proceeding along the path we have chosen for ourselves.
It is almost, but perhaps not quite, enough to make one wish for a sudden, early death. We all must go through it, so we’re not alone. It’s just that medical knowledge, technology, and skill can do only so much, and after that we still have to face the inevitable. Gawande gives lots of examples of patients and of people he has known who have these choices thrust upon them. On balance, he concludes, those who accept, rather than thoughtlessly fight, a terminal prognosis have a better death.
This book is worth reading, maybe more so before you need it. Filling out the hospital’s required “health care directive” is actually difficult unless you have someone like this to explain what it actually means. No intervention may mean weeks instead of months; it may also mean calm instead of recovering from radical surgery. It may just be unbearably depressing. I get that.
One interesting study Gawande talks about is one in which people who know their time horizons are short, or who experience life-threatening conditions (e.g., living in a war zone, 9/11, surviving a tsunami) change their view of what they want out of life, their "hierarchy of needs" as defined by Maslow. People with unlimited horizons put a high premium on growth and meeting people who are interesting and influential. Those with foreshortened horizons look to their closest friends and family for sustenance and comfort. War zones may not grant you friends or family, but certainly intense, highly-charged, and memorable relationships result from them. Little is expected, much is granted. And I guess that is key. There is more generosity to go around when one is in the final days and it may be best not to occlude that blessing with a confusion of treatments that do not mean a better life.
Gawande addresses some of the most difficult questions we have to decide in a lifetime. It is not easy to read. But it helps, I think, to know what choices we can make when the time comes for someone we love or for ourselves.
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Months later.
I have been thinking about the first quote I put at the beginning of my review since I read it. I wonder if that is not quite right. It is not mortality that is a horror if one is not part of a larger group. It is life itself....more
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