1/15/2021 Opinion | Oliver Sacks on Learning He Has Terminal Cancer - The New York Times https://nyti.ms/1AVTP3H OP-ED CONTRIBUTOR My Own Life By Oliver Sacks Feb. 19, 2015 A MONTH ago, I felt that I was in good health, even robust health. At 81, I still swim a mile a day. But my luck has run out — a few weeks ago I learned that I have multiple metastases in the liver. Nine years ago it was discovered that I had a rare tumor of the eye, an ocular melanoma. The radiation and lasering to remove the tumor ultimately left me blind in that eye. But though ocular melanomas metastasize in perhaps 50 percent of cases, given the particulars of my own case, the likelihood was much smaller. I am among the unlucky ones. I feel grateful that I have been granted nine years of good health and productivity since the original diagnosis, but now I am face to face with dying. The cancer occupies a third of my liver, and though its advance may be slowed, this particular sort of cancer cannot be halted. It is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can. In this I am encouraged by the words of one of my favorite philosophers, David Hume, who, upon learning that he was mortally ill at age 65, wrote a short autobiography in a single day in April of 1776. He titled it “My Own Life.” “I now reckon upon a speedy dissolution,” he wrote. “I have suffered very little pain from my disorder; and what is more strange, have, notwithstanding the great decline of my person, never suffered a moment’s abatement of my spirits. I possess the same ardour as ever in study, and the same gaiety in company.” I have been lucky enough to live past 80, and the 15 years allotted to me beyond Hume’s three score and five have been equally rich in work and love. In that time, I have published five books and completed an autobiography (rather longer than Hume’s few pages) to be published this spring; I have several other books nearly finished. Hume continued, “I am ... a man of mild dispositions, of command of temper, of an open, social, and cheerful humour, capable of attachment, but little susceptible of enmity, and of great moderation in all my passions.” Here I depart from Hume. While I have enjoyed loving relationships and friendships and have no real enmities, I cannot say (nor would anyone who knows me say) that I am a man of mild dispositions. On the contrary, I am a man of vehement disposition, with violent enthusiasms, and extreme immoderation in all my passions. And yet, one line from Hume’s essay strikes me as especially true: “It is difficult,” he wrote, “to be more detached from life than I am at present.” Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life. On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight. This will involve audacity, clarity and plain speaking; trying to straighten my accounts with the world. But there will be time, too, for some fun (and even some silliness, as well). I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at “NewsHour” every night. I shall no longer pay any attention to politics or arguments about global warming. This is not indifference but detachment — I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future. I rejoice when I meet gifted young people — even the one who biopsied and diagnosed my metastases. I feel the future is in good hands. I have been increasingly conscious, for the last 10 years or so, of deaths among my contemporaries. My generation is on the way out, and each death I have felt as an abruption, a tearing away of part of myself. There will be no one like us when we are gone, but then there is no one like anyone else, ever. When people die, they cannot be replaced. They leave holes that cannot be filled, for it is the fate — the genetic and neural fate — of every human being to be a unique individual, to find his own path, to live his own life, to die his own death. I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers. https://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html 1/2 1/15/2021 Opinion | Oliver Sacks on Learning He Has Terminal Cancer - The New York Times Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure. https://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html 2/2 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM Go to Chapter One Section • Go to Book World's Review Waist-High in the World A Life Among the Nondisabled By Nancy Mairs Chapter One: Plunging In I cannot begin to write this book. I've made some stabs at it, pried out of my rubbly brain a few pages, always "preliminary," from time to time. But mostly I write letters (never on time, so that the classic Nancy epistle always opens, "My apologies ..."), or read material at least tangentially related to my subject, or merely play solitaire on my computer until I try my own patience to the point of despair. The beginning of any project is always hard, I remind myself--the bigger, the harder--so that even a thousandword review is initially daunting. But something more is dragging at my heels this time. That's purely a metaphorical cliche, of course. I haven't walked in years now, and even the jaws of the Hound of Hell haven't any force, unless I change the metaphor to "dragging at my wheels," in which case he could slow my progress considerably. But the automatic manner in which I came up with a comparison having so little to do with my real situation helps to explain my excessive dawdling. In embarking upon this book about disability, I have committed myself to spend months contemplating issues and experiences that mark mine as an undesirable, perhaps even an unlivable, life. True, no matter what I'm doing I can no longer forget that I have multiple sclerosis, but I can dull my awareness with books or beers or computer games. Writing has the opposite effect. It absorbs my attention utterly. And I don't want to think about my crippled life. Then the telephone rings. "This is her husband speaking," I hear George say. We have chosen not to have an unlisted number, and whenever he's around he deftly fends off carpet cleaners and bankcard representatives and the hearty alumnae/i of one alma mater or another; I do the same in his absence; ours is a partnership of equals. "May I tell her who's calling?" He listens for a moment and then says, "Well, we're about to eat dinner, but I think she can give you a few minutes." This is no junk call. Bringing the telephone into the family room where I'm watching the NewsHour while he makes dinner, he tells me, "This is Jennifer, from Virginia. She's nineteen and she thinks she has symptoms." The voice on the line has the high, tight, little-girl quality that the speech of many women takes on when they're fighting tears. She's a college student and she's just been reading one of my essays. She doesn't say which, but I assume that it's "On Being a Cripple" from Plaintext, since that's the most widely anthologized. She hasn't even finished it yet, but she had to call as soon as she read about the blurred spot in my eye. At fourteen, she was treated for optic neuritis, which I recognize as a classic early symptom of MS, but she's never gotten an unequivocal diagnosis from a doctor. Or perhaps she has--a few are capable of forthrightness about this disease--but hasn't yet taken it in. Her new husband plainly hasn't, anyway, and so she is feeling isolated as well as scared. "I'm pretty sure it's what I have," she winds up. "What do you think?" http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 1 of 7 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM I'm no neurologist, but she doesn't need a diagnosis. She's had plenty of diagnoses, too many and in conflict, as is so often the case with this baffling disease. Now she needs to talk herself into accepting the possibility that the doctors who have said "MS" are right, and as a stranger with no personal stake in her illness, I'm a safe audience. I let her talk. "I'm sorry," she says at last. "Your husband said you're about to eat dinner. But I feel so much better just talking about MS. Maybe I could call again?" "Of course. But maybe you should look for someone closer to home and save on the phone bill." We both laugh and say good-night. George wasn't making up an excuse to keep Jennifer from talking too long. We really were about to have dinner. "You seem preoccupied," he comments as we eat our cheese tortollini. "Is it Jennifer?" "Yes," I admit, meeting his smile. It goes on being Jennifer throughout the evening and into the dark, where I lie beside him with the black cat between us, the two of them sound asleep. I should have asked for her last name, I think, her address, her telephone number. Then I could ... what? What am I supposed to do about Jennifer? Take away her MS, if that indeed is what she has? Failing that, calm her fears? Give her a college degree? Transform her husband, who will almost certainly leave her, and sooner rather than later, from a scared kid into a pillar of support and sympathy? I may wish I were God, but the truth is that I can't even tie my own shoes. Jennifer would be in real trouble if she had to rely on me to organize her life. What I'm supposed to do about Jennifer, of course, is to write a book: one in which she can recognize and accept and even celebrate her circumstances, but also one that reveals to those who care about her what needs and feelings those circumstances may engender in her. Not a text about MS in particular or disability in general, because plenty of those exist. Not a little instruction book either, since practical training is best conducted one-on-one by physical and occupational therapists, and psychological advice to so diverse an audience could comprise only the most general platitudes. More like a Baedeker for a country to which no one travels willingly: the observations and responses of a single wayfarer who hopes, in sketching her own experiences, to make the terrain seem less alien, less perilous, and far more amusing than the myths and legends about it would suggest. Like Jennifer, I often need no more than someone to whom I can speak frankly about MS without being dismissed as a whiner (a distancing tactic often practiced by those in whom disability triggers unbearable anxiety), someone like my friend Joan. A nurse case manager who has worked with both the terminally and the chronically ill, Joan entered my life when I enrolled in a study to demonstrate the value to people with multiple sclerosis of regular support from nurses, social workers, and physical therapists. During our acquaintance, she has helped me in countless practical ways to prepare myself for George's possible death from cancer and my own relentless physical losses. But I have benefited most, I think, from her ears. Who wouldn't? In a society that prates about, but seldom practices, communication, the craving to be listened to, heard, understood--which originates with the first terrified wail, the circling arms, the breast, the consolatory murmur--is hard to assuage. And because a cripple, in order to earn a shot at social intercourse with "normals," must never publicly lament her state, must preferably never even mention it, an other who treats disability as a safe topic of conversation offers immeasurable relief, as Jennifer's gratitude reveals. Joan is a patient listener but hardly passive. She sits erect, eyes wide, hands loose in her lap, as though she didn't have several dozen others just like you whose stories she must soon rush off to hear. Every so often she interrupts with a brief question, which might be a request for information, or a signal that she's still with you http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 2 of 7 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM interrupts with a brief question, which might be a request for information, or a signal that she's still with you no matter how tedious your tale, but almost never has so simple an effect. Usually, it startles me into new awareness, as when she asked, after I'd taken on at more than usual length one morning about the ways in which MS was cramping and skewing my life: "But Nancy, who would you be if you didn't have MS?" Although I have known at least since freshman philosophy with dear, desiccated Holcomb Austin that such an intrinsically unanswerable question is not therefore imponderable, that it is, on the contrary, peculiarly and necessarily ponderable, I tend to duck rigorous duties of this sort in favor of working double-crostic puzzles, where I can count in time on laying out an answer--and only one, the right one--which, being of no consequence whatsoever, is powerless to disturb. Dozens of times, no doubt, I have let the question who I would be if I didn't have MS drift across my cerebral cortex and on out into the ether or wherever it is that spurned speculations go. But Joan's query, uttered in a high, soft voice nothing like my own, could not be so readily dismissed. It was given me, like a koan, to live with: not so much a question as a task. Who would I be if I didn't have MS? Literally, no body. I am not "Nancy + MS," and no simple subtraction can render me whole. Nor do I contain MS, like a tumor that might be sliced out if only I could find a surgeon brave and deft enough to operate. Physiologically, lesions--sclerotic patches, or plaque, where the nerve sheath has been destroyed and scar tissue has formed in its place--have appeared throughout my brain and spinal cord: they are integrated into my central nervous system just as thoroughly as the remaining healthy tissue. Since they can be located with Magnetic Resonance Imaging, I suppose they might be cut away, but what remained would be an even less serviceable version of a "Nancy" than the one MS has fabricated. In an academic sense, this notion isn't difficult to grasp: that I would be somehow diminished, even damaged, without MS. But experientially, just the opposite seems true. That is, I often perceive myself to be living less authentically than other people. Whether I'd feel this way if I were congenitally disabled, or if my condition were not degenerative, I'm not sure; my perceptions may be shaped by a sense of contrast with the twentynine years I lived before diagnosis and by the bleak knowledge that, no matter how bad my symptoms are today, they will be worse tomorrow. How can I believe that my life is real when it feels so desperately provisional? Oddly, I don't consider the lives of other people with disabilities to be similarly inauthentic. Only my own seems flimsy and counterfeit. Feeling thus deprived of a legitimate self, I can try to imagine an MS-less Nancy. And since writing has always formed the core of my identity, the means whereby I have saved and shaped my life, I wonder in particular whether I'd have become a writer if I hadn't developed this disease. In all likelihood, I would. From the age of thirteen I claimed writing to be my "future profession." But I could not conceivably have become the writer I am. Just as demyelinated lesions have spread throughout my central nervous system, their consequences have pervaded every region of my existence. MS is as much the essence of my "I" as my father's death and my mother's remarriage, my Yankee girlhood, my conversion to Roman Catholicism, my doctorate in English literature--some of these elements chosen, some arbitrarily handed to me. It can't be stripped away without mutilating the being who bears it. Nevertheless, I might have chosen to write in such a way as to disregard or deny or disguise the fact that I have MS. In the process, I could have made a good many people happier than I have done, since the revelation of personal shortcomings land chronic illness is definitely deemed a shortcoming! tends to rattle one's family members, especially the elderly ones, together with friends and even utter strangers who might be thought to have no stake in them at all. Moreover, I fondly suppose, I could have made a great deal more money, since many more readers are attracted to the carryings-on of bodies rising half-decomposed from the grave or tumbling half-clothed into an adulterous bed than to the quotidian truths of a body in trouble. http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 3 of 7 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM I could have.... I could have.... But I didn't. Why not? Because I have MS? Yes, I think so. My work has always been deliberately and deeply grounded in my own experience because that experience is all I reliably have that no other writer can give. There are readers--not a lot of them, perhaps, but even one is enough--who need, for a tangle of reasons, to be told that a life commonly held to be insufferable can be full and funny. I'm living the life. I can tell them. What I cannot do, and would not choose to do even if I thought I could, is to depict and analyze "disability" as a global subject. The category is simply so broad, and the possible approaches to it so numerous, that all the attempts I've come across at generalizing about it run into difficulty. Theoretical books and articles do exist, though they are not always easy to track down, since the classification "disability studies" hasn't been widely adopted by bookstores, libraries, and indexes. In even the most ground-breaking and conscientious of these texts, however, like Barbara Hillyer's Feminism and Disability, the attempt to illuminate the subject as a whole tends to blur the focus and obscure significant distinctions. Then, too, by comparison with case studies, such as psychologist Ludwig Binswanger's "Case of Ellen West," and memoirs like The Little Locksmith by Katharine Butler Hathaway, the product of this global approach can make for dull reading. Yet many of the more personal accounts, though absorbing, concentrate so fully, almost claustrophobically, on the singularities of disabled life that they fail to reflect the ways in which such life is indistinguishable from any other sort: fueled by the same appetites, fraught with the same anxieties, replete with the same delights. My hope is that, in scrutinizing some of these elements common to the human condition--among them adjustment to change, body image and sexuality, the need for both independence and nurturance, the ceaseless search for equality and justice and pure pleasure--through the lens of my own experiences and those of people I know well, I can bring to life their particular significance in terms of disability. At the outset, I want to make clear that I speak as an individual and not as a representative of "my kind," whatever you take that to be. The most acceptable designation for us just now seems to be "people with disabilities." One of the underlying problems with a comprehensive term like "disability," however, is that there has never been any universal agreement about who belongs in the company and who does not, or even what to call the presumed members. In a contest to give people like me a positive name, a man once won $50,000 for coming up with the term "people with differing abilities"--and the prize wasn't offered for the best phrase composed by a mentally impaired individual, either. Some other labels, marginally less vacuous though not necessarily more revelatory, include "handicapped" and its chipper variant "handi-capable," "physically challenged," and "developmentally delayed." As one of my idiosyncrasies, I prefer to call myself a cripple. I have written elsewhere at length about this choice, for which I have very specific reasons. For one thing, because it is a word many people with disabilities find deeply offensive, I apply it only to myself, and so it reminds me that I am not speaking for others. For another, it lets you know what my condition is: I can't use my limbs as I once could. Blindness, deafness, intellectual impairment all qualify as "disabilities" (or "differing abilities" to people with mealy mouths), but the circumstances they impose are nothing like mine. "Mobility impaired," the euphemizers would call me, as though a surfeit of syllables could soften my reality. No such luck. I still can't sit up in bed, can't take an unaided step, can't dress myself, can't open doors (and I get damned sick of waiting in the loo until some other woman needs to pee and opens the door for me). My choice may reflect a desire for accuracy more than anything else. In truth, although I am severely crippled, I am hardly disabled at all, since, thanks to technology and my relatively advantaged circumstances, I'm not prevented from engaging in the meaningful activities and relationships the human spirit craves. I'm not putting on a brave face here, and I'm not denying the seriousness of my situation. But I think it is very, very important to distinguish "disability," which is a social construct rather than a medical diagnosis, from some of the circumstances associated with it, often by people who have little direct knowledge of physical http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 4 of 7 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM some of the circumstances associated with it, often by people who have little direct knowledge of physical and mental limitations and their consequences. Like all negative terms, "disability" is part of a binary, existing in relation to a privileged opposite: that is, one is "disabled" only from the point of view of another defined by common social values as "able." Binary thinking is merely a habit of mind, and despite the comfort of order and familiarity it offers, it doesn't apprehend reality, which is, let's face it, a frightful jumble. Gifts get handed out higgledy-piggledy. I'm so uncoordinated that I'd never have gotten any good at tennis, even if I hadn't developed MS; but then, Monica Seles probably can't write her way out of a paper bag. (This is pure speculation, and it would serve me right if she won a Pulitzer some day.) From this perspective, the phrase "people with differing abilities," however uselessly inexact, intuitively grasps life's messiness in a way that the polarity "ability-disability" does not. "I" am disabled, then, only from "your" point of view (and "you" from "mine"). Whoever gets to define ability puts everyone else in place, which (human nature tending to define one's own as the proper place) then becomes other, outside: a cheerless and chilly spot. No wonder I prefer the self-defined "cripple." When I have occasion to refer to a class with a broader spectrum of impairments, I use the more conventional "people with disabilities," or "the disabled" for short; and people who lack them I call "the nondisabled," since in relation to me, they are the deficient ones. Already, in this way, I begin to reconstruct the world. I have spent most of my life among the nondisabled. At first, and for nearly three decades, I was simply one myself. Even after my multiple sclerosis was diagnosed, I didn't identify myself as disabled. True, a slight limp and crushing fatigue forced me to struggle through tasks that others accomplished with ease, but I carried them out nevertheless, and I may even have made them look easy sometimes. I didn't consciously avoid people with disabilities, but neither did I seek out their company; if I found myself in it, I was aware of being different from them, with their tremors, their slurred speech, their wandering eyes, their walkers and wheelchairs and leg bags. And that's the way I would have put it--"me" and "them"--a sign of the distance I perceived between us. Today, I remain aware during every waking moment, and also in many of my dreams, that my legs don't work, that only one of my arms works (and that not very well), that my neck strains to hold up my heavy head, that my world is hemmed by walls to be banged, that the "them" from whom I'm now divorced are the nondisabled, bounding around heedlessly and hailing one another through the empty air above my head. Since I'm not about to abandon family and old friends, most of my activities still take place among them. I no longer avoid others with disabilities, however. In fact, one of the high points of my week is the water-exercise class sponsored by the MS Society, and not just because I can walk buoyed by water as I no longer can on dry land. A couple of weeks ago, a local television crew came to film our group. "What do you suppose people will think when they see us?" asked Amy, paddling beside me with a long snake of neon-pink foam tucked under her arms for ballast. "`Oh, the poor things!'" I laughed. "They have no idea we're capable of having fun." I looked around the pool. There was handsome Fritz, whose MS hardly shows except in his slightly halting gait. Joe was propped in the corner, head bobbing, wasted arms and legs churning the water. With the leg bag into which her catheter empties taped neatly in place, Tune, still pretty and stylish at sixty-eight, trailed a scent of expensive perfume above the stink of chlorine. Karen didn't have a leg bag, and her urine floated in its sealed pouch on the blue surface. Chip, though shy, joined in our laughter as we tried to stay upright while our feet traced a grapevine from one wall to the other. We weren't laughing at anything in particular. Our spirits were simply high. A stranger might see us as grotesque, I suppose. Once, I probably would have done so myself. Now, each week I see a group of friends lucky enough to be free at 11:00 on a Thursday morning for an hour of exercise. http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 5 of 7 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM I see a group of friends lucky enough to be free at 11:00 on a Thursday morning for an hour of exercise. These days, I "Tell all the Truth--," in accord with Emily Dickinson's instruction, "but tell it Slant--" more literally than Emily ever envisioned. Unless you've got a bad back, you're probably reading this sitting down. Look up from the page. Look around. Imagine that this is your angle of vision not just until you decide to get up and walk to the kitchen for a cup of coffee but forever. It's not a bad angle of vision, mind you [unless you want to check how much dust has accumulated on the top of the bookcase beside your, but it is a definite one, and the world you see from it is definitely different from the one you see when you're standing. This is my perpetual view, from the height of an erect adult's waist. And the difference has consequences. This is a book about such consequences. In the past I have written out of my own experience about disability, but I have never examined the subject systematically. Nor have many other writers to my satisfaction. Yet increasingly sophisticated medical technology ensures that more of us who are born with or develop some sort of impairment will survive, living longer and more publicly than ever before. Life expectancy has increased more than thirty years since the turn of. the century, a span that offers all kinds of new possibilities--among them, alas, the chance that illness or accident will permanently alter physical capacities. Thus, my interest in this subject, though intensely personal, is by no means private. Something without precedent is taking place, and we need a theoretical and imaginative framework for evaluating and managing the repercussions. In writing a series of essays in which I explore the spatial and temporal exigencies of a life shaped by severe physical disability--a life bound by permissions (I have to weigh every act in terms of whether I can or cannot perform it) and obligations (I must overcome inertia to do the least thing)--I hope to discover what physical, emotional, moral, and spiritual elements shape the "differences" founded by disability. I begin with a welter of questions coalescing around several themes: language, rights, caregiving, bodies, the larger community. Then I ruminate. That's why I like the essay: it's contemplative, exploratory, even equivocal, not definitive. If there are absolute answers to the kinds of questions I can ask, I don't know them. The essays in the first part of the book probe some of the intimate issues living with a disability raises. In the second part, I take up more public concerns. I have kept my focus throughout on the central and ambiguous reality of my title. I am literally diminished by my disability, reduced to a height of about 4' 8", consigned to gazing at navels (generally shrouded) other than my own. But diminution is not the whole of it. "Waist-high" also resonates with "knee-deep." This is no piteously deprived state I'm in down here but a rich, complicated, and utterly absorbing process of immersion in whatever the world has to offer. This is not, however, a "feel-good" book. Too bad, because if it were, it might spend weeks on the New York Times best-seller list and make of me the wealthy woman I have always dreamed of being. In truth, I would give my eyeteeth (which narrowly escaped being knocked out along with my incisors when I fell flat on my face several years back) to write a best-seller, but this is not it. I am not now, nor have I ever been, a member of the inspirational class. I suppose you might call this instead a "feel-real" book, and reality has never been high on any popular list. I ask you to read this book, then, not to be uplifted, but to be lowered and steadied into what may be unfamiliar, but is not inhospitable, space. Sink down beside me, take my hand, and together we'll watch the waists of the world drift past. © 1996 Nancy Mairs Beacon Press http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 6 of 7 washingtonpost.com: Waist-High in the World: A Life Among the Nondisabled 11/17/19, 6(30 PM Back to the top http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/waisthighintheworld.htm Page 7 of 7 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM Unspeakable Conversations By Harriet McBryde Johnson Feb. 16, 2003 He insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened. Whenever I try to wrap my head around his tight string of syllogisms, my brain gets so fried it's . . . almost fun. Mercy! It's like ''Alice in Wonderland.'' It is a chilly Monday in late March, just less than a year ago. I am at Princeton University. My host is Prof. Peter Singer, often called -- and not just by his book publicist -- the most influential philosopher of our time. He is the man who wants me dead. No, that's not at all fair. He wants to legalize the killing of certain babies who might come to be like me if allowed to live. He also says he believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn't consider them ''persons.'' https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 1 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM What does it take to be a person? Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live. At this stage of my life, he says, I am a person. However, as an infant, I wasn't. I, like all humans, was born without self-awareness. And eventually, assuming my brain finally gets so fried that I fall into that wonderland where self and other and present and past and future blur into one boundless, formless all or nothing, then I'll lose my personhood and therefore my right to life. Then, he says, my family and doctors might put me out of my misery, or out of my bliss or oblivion, and no one count it murder. I have agreed to two speaking engagements. In the morning, I talk to 150 undergraduates on selective infanticide. In the evening, it is a convivial discussion, over dinner, of assisted suicide. I am the token cripple with an opposing view. I had several reasons for accepting Singer's invitation, some grounded in my involvement in the disability rights movement, others entirely personal. For the movement, it seemed an unusual opportunity to experiment with modes of discourse that might work with very tough audiences and bridge the divide between our perceptions and theirs. I didn't expect to straighten out Singer's head, but maybe I could reach a student or two. Among the personal reasons: I was sure it would make a great story, first for telling and then for writing down. By now I've told it to family and friends and colleagues, over lunches and dinners, on long car trips, in scads of e-mail messages and a couple of formal speeches. But it seems to be a story that just won't settle down. After all these tellings, it still lacks a coherent structure; I'm miles away from a rational argument. I keep getting interrupted by questions -- like these: https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 2 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM Q: Was he totally grossed out by your physical appearance? A: He gave no sign of it. None whatsoever. Q: How did he handle having to interact with someone like you? A: He behaved in every way appropriately, treated me as a respected professional acquaintance and was a gracious and accommodating host. Q: Was it emotionally difficult for you to take part in a public discussion of whether your life should have happened? A: It was very difficult. And horribly easy. Q: Did he get that job at Princeton because they like his ideas on killing disabled babies? A: It apparently didn't hurt, but he's most famous for animal rights. He's the author of ''Animal Liberation.'' Q: How can he put so much value on animal life and so little value on human life? That last question is the only one I avoid. I used to say I don't know; it doesn't make sense. But now I've read some of Singer's writing, and I admit it does make sense -- within the conceptual world of Peter Singer. But I don't want to go there. Or at least not for long. So I will start from those other questions and see where the story goes this time. That first question, about my physical appearance, needs some explaining. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 3 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM It's not that I'm ugly. It's more that most people don't know how to look at me. The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that's the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I'm Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin. When, in childhood, my muscles got too weak to hold up my spine, I tried a brace for a while, but fortunately a skittish anesthesiologist said no to fusion, plates and pins -- all the apparatus that might have kept me straight. At 15, I threw away the back brace and let my spine reshape itself into a deep twisty S-curve. Now my right side is two deep canyons. To keep myself upright, I lean forward, rest my rib cage on my lap, plant my elbows beside my knees. Since my backbone found its own natural shape, I've been entirely comfortable in my skin. I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn't die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don't know what to make of us. Two or three times in my life -- I recall particularly one largely crip, largely lesbian cookout halfway across the continent -- I have been looked at as a rare kind of beauty. There is also the bizarre fact that where I live, Charleston, S.C., some people call me Good Luck Lady: they consider it propitious to cross my path when a hurricane is coming and to kiss my head just before voting day. But most often the reactions are decidedly negative. Strangers on the street are moved to comment: I admire you for being out; most people would give up. God bless you! I'll pray for you. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 4 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM You don't let the pain hold you back, do you? If I had to live like you, I think I'd kill myself. I used to try to explain that in fact I enjoy my life, that it's a great sensual pleasure to zoom by power chair on these delicious muggy streets, that I have no more reason to kill myself than most people. But it gets tedious. God didn't put me on this street to provide disability awareness training to the likes of them. In fact, no god put anyone anywhere for any reason, if you want to know. But they don't want to know. They think they know everything there is to know, just by looking at me. That's how stereotypes work. They don't know that they're confused, that they're really expressing the discombobulation that comes in my wake. So. What stands out when I recall first meeting Peter Singer in the spring of 2001 is his apparent immunity to my looks, his apparent lack of discombobulation, his immediate ability to deal with me as a person with a particular point of view. Then, 2001. Singer has been invited to the College of Charleston, not two blocks from my house. He is to lecture on ''Rethinking Life and Death.'' I have been dispatched by Not Dead Yet, the national organization leading the disabilityrights opposition to legalized assisted suicide and disability-based killing. I am to put out a leaflet and do something during the Q. and A. On arriving almost an hour early to reconnoiter, I find the scene almost entirely peaceful; even the boisterous display of South Carolina spring is muted by gray wisps of Spanish moss and mottled oak bark. I roll around the corner of the building and am confronted with the unnerving sight of two people I know sitting on a park bench eating veggie pitas with Singer. Sharon is a veteran activist for human rights. Herb is South Carolina's https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 5 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM most famous atheist. Good people, I've always thought -- now sharing veggie pitas and conversation with a proponent of genocide. I try to beat a retreat, but Herb and Sharon have seen me. Sharon tosses her trash and comes over. After we exchange the usual courtesies, she asks, ''Would you like to meet Professor Singer?'' She doesn't have a clue. She probably likes his book on animal rights. ''I'll just talk to him in the Q. and A.'' But Herb, with Singer at his side, is fast approaching. They are looking at me, and Herb is talking, no doubt saying nice things about me. He'll be saying that I'm a disability rights lawyer and that I gave a talk against assisted suicide at his secular humanist group a while back. He didn't agree with everything I said, he'll say, but I was brilliant. Singer appears interested, engaged. I sit where I'm parked. Herb makes an introduction. Singer extends his hand. I hesitate. I shouldn't shake hands with the Evil One. But he is Herb's guest, and I simply can't snub Herb's guest at the college where Herb teaches. Hereabouts, the rule is that if you're not prepared to shoot on sight, you have to be prepared to shake hands. I give Singer the three fingers on my right hand that still work. ''Good afternoon, Mr. Singer. I'm here for Not Dead Yet.'' I want to think he flinches just a little. Not Dead Yet did everything possible to disrupt his first week at Princeton. I sent a check to the fund for the 14 arrestees, who included comrades in power chairs. But if Singer flinches, he instantly recovers. He answers my questions about the lecture format. When he says he looks forward to an interesting exchange, he seems entirely sincere. It is an interesting exchange. In the lecture hall that afternoon, Singer lays it all out. The ''illogic'' of allowing abortion but not infanticide, of allowing withdrawal of life support but not active killing. Applying the basic assumptions of https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 6 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM preference utilitarianism, he spins out his bone-chilling argument for letting parents kill disabled babies and replace them with nondisabled babies who have a greater chance at happiness. It is all about allowing as many individuals as possible to fulfill as many of their preferences as possible. As soon as he's done, I get the microphone and say I'd like to discuss selective infanticide. As a lawyer, I disagree with his jurisprudential assumptions. Logical inconsistency is not a sufficient reason to change the law. As an atheist, I object to his using religious terms (''the doctrine of the sanctity of human life'') to characterize his critics. Singer takes a note pad out of his pocket and jots down my points, apparently eager to take them on, and I proceed to the heart of my argument: that the presence or absence of a disability doesn't predict quality of life. I question his replacement-baby theory, with its assumption of ''other things equal,'' arguing that people are not fungible. I draw out a comparison of myself and my nondisabled brother Mac (the next-born after me), each of us with a combination of gifts and flaws so peculiar that we can't be measured on the same scale. He responds to each point with clear and lucid counterarguments. He proceeds with the assumption that I am one of the people who might rightly have been killed at birth. He sticks to his guns, conceding just enough to show himself open-minded and flexible. We go back and forth for 10 long minutes. Even as I am horrified by what he says, and by the fact that I have been sucked into a civil discussion of whether I ought to exist, I can't help being dazzled by his verbal facility. He is so respectful, so free of condescension, so focused on the argument, that by the time the show is over, I'm not exactly angry with him. Yes, I am shaking, furious, enraged -- but it's for the big room, 200 of my fellow Charlestonians who have listened with polite interest, when in decency they should have run him out of town on a rail. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 7 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM My encounter with Peter Singer merits a mention in my annual canned letter that December. I decide to send Singer a copy. In response, he sends me the nicest possible e-mail message. Dear Harriet (if he may) . . . Just back from Australia, where he's from. Agrees with my comments on the world situation. Supports my work against institutionalization. And then some pointed questions to clarify my views on selective infanticide. I reply. Fine, call me Harriet, and I'll reciprocate in the interest of equality, though I'm accustomed to more formality. Skipping agreeable preambles, I answer his questions on disability-based infanticide and pose some of my own. Answers and more questions come back. Back and forth over several weeks it proceeds, an engaging discussion of baby killing, disability prejudice and related points of law and philosophy. Dear Harriet. Dear Peter. Singer seems curious to learn how someone who is as good an atheist as he is could disagree with his entirely reasonable views. At the same time, I am trying to plumb his theories. What has him so convinced it would be best to allow parents to kill babies with severe disabilities, and not other kinds of babies, if no infant is a ''person'' with a right to life? I learn it is partly that both biological and adoptive parents prefer healthy babies. But I have trouble with basing lifeand-death decisions on market considerations when the market is structured by prejudice. I offer a hypothetical comparison: ''What about mixed-race babies, especially when the combination is entirely nonwhite, who I believe are just about as unadoptable as babies with disabilities?'' Wouldn't a law allowing the killing of these undervalued babies validate race prejudice? Singer agrees there is a problem. ''It would be horrible,'' he says, ''to see mixed-race babies being killed because they can't be adopted, whereas white ones could be.'' What's the https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 8 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM difference? Preferences based on race are unreasonable. Preferences based on ability are not. Why? To Singer, it's pretty simple: disability makes a person ''worse off.'' Are we ''worse off''? I don't think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs. Pressing me to admit a negative correlation between disability and happiness, Singer presents a situation: imagine a disabled child on the beach, watching the other children play. It's right out of the telethon. I expected something more sophisticated from a professional thinker. I respond: ''As a little girl playing on the beach, I was already aware that some people felt sorry for me, that I wasn't frolicking with the same level of frenzy as other children. This annoyed me, and still does.'' I take the time to write a detailed description of how I, in fact, had fun playing on the beach, without the need of standing, walking or running. But, really, I've had enough. I suggest to Singer that we have exhausted our topic, and I'll be back in touch when I get around to writing about him. He responds by inviting me to Princeton. I fire off an immediate maybe. Of course I'm flattered. Mama will be impressed. But there are things to consider. Not Dead Yet says -- and I completely agree -that we should not legitimate Singer's views by giving them a forum. We should not make disabled lives subject to debate. Moreover, any spokesman chosen by https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 9 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM the opposition is by definition a token. But even if I'm a token, I won't have to act like one. And anyway, I'm kind of stuck. If I decline, Singer can make some hay: ''I offered them a platform, but they refuse rational discussion.'' It's an old trick, and I've laid myself wide open. My invitation is to have an exchange of views with Singer during his undergraduate course. He also proposes a second ''exchange,'' open to the whole university, later in the day. This sounds a lot like debating my life -- and on my opponent's turf, with my opponent moderating, to boot. I offer a counterproposal, to which Singer proves amenable. I will open the class with some comments on infanticide and related issues and then let Singer grill me as hard as he likes before we open it up for the students. Later in the day, I might take part in a discussion of some other disability issue in a neutral forum. Singer suggests a faculty-student discussion group sponsored by his department but with cross-departmental membership. The topic I select is ''Assisted Suicide, Disability Discrimination and the Illusion of Choice: A Disability Rights Perspective.'' I inform a few movement colleagues of this turn of events, and advice starts rolling in. I decide to go with the advisers who counsel me to do the gig, lie low and get out of Dodge. I ask Singer to refer me to the person who arranges travel at Princeton. I imagine some capable and unflappable woman like my sister, Beth, whose varied job description at a North Carolina university includes handling visiting artists. Singer refers me to his own assistant, who certainly seems capable and unflappable enough. However, almost immediately Singer jumps back in via email. It seems the nearest hotel has only one wheelchair-accessible suite, available with two rooms for $600 per night. What to do? I know I shouldn't be so accommodating, but I say I can make do with an inaccessible room if it has certain features. Other logistical issues come up. We go back and forth. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 10 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM Questions and answers. Do I really need a lift-equipped vehicle at the airport? Can't my assistant assist me into a conventional car? How wide is my wheelchair? By the time we're done, Singer knows that I am 28 inches wide. I have trouble controlling my wheelchair if my hand gets cold. I am accustomed to driving on rough, irregular surfaces, but I get nervous turning on steep slopes. Even one step is too many. I can swallow purées, soft bread and grapes. I use a bedpan, not a toilet. None of this is a secret; none of it cause for angst. But I do wonder whether Singer is jotting down my specs in his little note pad as evidence of how ''bad off'' people like me really are. I realize I must put one more issue on the table: etiquette. I was criticized within the movement when I confessed to shaking Singer's hand in Charleston, and some are appalled that I have agreed to break bread with him in Princeton. I think they have a very good point, but, again, I'm stuck. I'm engaged for a day of discussion, not a picket line. It is not in my power to marginalize Singer at Princeton; nothing would be accomplished by displays of personal disrespect. However, chumminess is clearly inappropriate. I tell Singer that in the lecture hall it can't be Harriet and Peter; it must be Ms. Johnson and Mr. Singer. He seems genuinely nettled. Shouldn't it be Ms. Johnson and Professor Singer, if I want to be formal? To counter, I invoke the ceremonial low-country usage, Attorney Johnson and Professor Singer, but point out that Mr./Ms. is the custom in American political debates and might seem more normal in New Jersey. All right, he says. Ms./Mr. it will be. I describe this awkward social situation to the lawyer in my office who has served as my default lunch partner for the past 14 years. He gives forth a fullbody shudder. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 11 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM ''That poor, sorry son of a bitch! He has no idea what he's in for.'' Being a disability rights lawyer lecturing at Princeton does confer some cachet at the Newark airport. I need all the cachet I can get. Delta Airlines has torn up my power chair. It is a fairly frequent occurrence for any air traveler on wheels. When they inform me of the damage in Atlanta, I throw a monumental fit and tell them to have a repair person meet me in Newark with new batteries to replace the ones inexplicably destroyed. Then I am told no new batteries can be had until the morning. It's Sunday night. On arrival in Newark, I'm told of a plan to put me up there for the night and get me repaired and driven to Princeton by 10 a.m. ''That won't work. I'm lecturing at 10. I need to get there tonight, go to sleep and be in my right mind tomorrow.'' ''What? You're lecturing? They told us it was a conference. We need to get you fixed tonight!'' Carla, the gate agent, relieves me of the need to throw any further fits by undertaking on my behalf the fit of all fits. Carmen, the personal assistant with whom I'm traveling, pushes me in my disabled chair around the airport in search of a place to use the bedpan. However, instead of diaper-changing tables, which are functional though far from private, we find a flip-down plastic shelf that doesn't look like it would hold my 70 pounds of body weight. It's no big deal; I've restricted my fluids. But Carmen is a little freaked. It is her first adventure in power-chair air travel. I thought I prepared her for the trip, but I guess I neglected to warn her about the probability of wheelchair destruction. I keep forgetting that even people who know me well don't know much about my world. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 12 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM We reach the hotel at 10:15 p.m., four hours late. I wake up tired. I slept better than I would have slept in Newark with an unrepaired chair, but any hotel bed is a near guarantee of morning crankiness. I tell Carmen to leave the TV off. I don't want to hear the temperature. I do the morning stretch. Medical people call it passive movement, but it's not really passive. Carmen's hands move my limbs, following my precise instructions, her strength giving effect to my will. Carmen knows the routine, so it is in near silence that we begin easing slowly into the day. I let myself be propped up to eat oatmeal and drink tea. Then there's the bedpan and then bathing and dressing, still in bed. As the caffeine kicks in, silence gives way to conversation about practical things. Carmen lifts me into my chair and straps a rolled towel under my ribs for comfort and stability. She tugs at my clothes to remove wrinkles that could cause pressure sores. She switches on my motors and gives me the means of moving without anyone's help. They don't call it a power chair for nothing. I drive to the mirror. I do my hair in one long braid. Even this primal hairdo requires, at this stage of my life, joint effort. I undo yesterday's braid, fix the part and comb the hair in front. Carmen combs where I can't reach. I divide the mass into three long hanks and start the braid just behind my left ear. Section by section, I hand it over to her, and her unimpaired young fingers pull tight, crisscross, until the braid is fully formed. A big polyester scarf completes my costume. Carmen lays it over my back. I tie it the way I want it, but Carmen starts fussing with it, trying to tuck it down in the back. I tell her that it's fine, and she stops. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 13 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM On top of the scarf, she wraps the two big shawls that I hope will substitute for an overcoat. I don't own any real winter clothes. I just stay out of the cold, such cold as we get in Charleston. We review her instructions for the day. Keep me in view and earshot. Be instantly available but not intrusive. Be polite, but don't answer any questions about me. I am glad that she has agreed to come. She's strong, smart, adaptable and very loyal. But now she is digging under the shawls, fussing with that scarf again. ''Carmen. What are you doing?'' ''I thought I could hide this furry thing you sit on.'' ''Leave it. Singer knows lots of people eat meat. Now he'll know some crips sit on sheepskin.'' The walk is cold but mercifully short. The hotel is just across the street from Princeton's wrought-iron gate and a few short blocks from the building where Singer's assistant shows us to the elevator. The elevator doubles as the janitor's closet -- the cart with the big trash can and all the accouterments is rolled aside so I can get in. Evidently there aren't a lot of wheelchair people using this building. We ride the broom closet down to the basement and are led down a long passageway to a big lecture hall. As the students drift in, I engage in light badinage with the sound technician. He is squeamish about touching me, but I insist that the cordless lavaliere is my mike of choice. I invite him to clip it to the big polyester scarf. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 14 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM The students enter from the rear door, way up at ground level, and walk down stairs to their seats. I feel like an animal in the zoo. I hadn't reckoned on the architecture, those tiers of steps that separate me from a human wall of apparent physical and mental perfection, that keep me confined down here in my pit. It is 5 before 10. Singer is loping down the stairs. I feel like signaling to Carmen to open the door, summon the broom closet and get me out of here. But Singer greets me pleasantly and hands me Princeton's check for $500, the fee he offered with apologies for its inadequacy. So. On with the show. My talk to the students is pretty Southern. I've decided to pound them with heart, hammer them with narrative and say ''y'all'' and ''folks.'' I play with the emotional tone, giving them little peaks and valleys, modulating three times in one 45-second patch. I talk about justice. Even beauty and love. I figure they haven't been getting much of that from Singer. Of course, I give them some argument too. I mean to honor my contractual obligations. I lead with the hypothetical about mixed-race, nonwhite babies and build the ending around the question of who should have the burden of proof as to the quality of disabled lives. And woven throughout the talk is the presentation of myself as a representative of a minority group that has been rendered invisible by prejudice and oppression, a participant in a discussion that would not occur in a just world. I let it go a little longer than I should. Their faces show they're going where I'm leading, and I don't look forward to letting them go. But the clock on the wall reminds me of promises I mean to keep, and I stop talking and submit myself to examination and inquiry. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 15 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM Singer's response is surprisingly soft. Maybe after hearing that this discussion is insulting and painful to me, he doesn't want to exacerbate my discomfort. His reframing of the issues is almost pro forma, abstract, entirely impersonal. Likewise, the students' inquiries are abstract and fairly predictable: anencephaly, permanent unconsciousness, eugenic abortion. I respond to some of them with stories, but mostly I give answers I could have e-mailed in. I call on a young man near the top of the room. ''Do you eat meat?'' ''Yes, I do.'' ''Then how do you justify--'' ''I haven't made any study of animal rights, so anything I could say on the subject wouldn't be worth everyone's time.'' The next student wants to work the comparison of disability and race, and Singer joins the discussion until he elicits a comment from me that he can characterize as racist. He scores a point, but that's all right. I've never claimed to be free of prejudice, just struggling with it. Singer proposes taking me on a walk around campus, unless I think it would be too cold. What the hell? ''It's probably warmed up some. Let's go out and see how I do.'' He doesn't know how to get out of the building without using the stairs, so this time it is my assistant leading the way. Carmen has learned of another elevator, which arrives empty. When we get out of the building, she falls behind a couple of paces, like a respectful chaperone. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 16 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM In the classroom there was a question about keeping alive the unconscious. In response, I told a story about a family I knew as a child, which took loving care of a nonresponsive teenage girl, acting out their unconditional commitment to each other, making all the other children, and me as their visitor, feel safe. This doesn't satisfy Singer. ''Let's assume we can prove, absolutely, that the individual is totally unconscious and that we can know, absolutely, that the individual will never regain consciousness.'' I see no need to state an objection, with no stenographer present to record it; I'll play the game and let him continue. ''Assuming all that,'' he says, ''don't you think continuing to take care of that individual would be a bit -- weird?'' ''No. Done right, it could be profoundly beautiful.'' ''But what about the caregiver, a woman typically, who is forced to provide all this service to a family member, unable to work, unable to have a life of her own?'' ''That's not the way it should be. Not the way it has to be. As a society, we should pay workers to provide that care, in the home. In some places, it's been done that way for years. That woman shouldn't be forced to do it, any more than my family should be forced to do my care.'' Singer takes me around the architectural smorgasbord that is Princeton University by a route that includes not one step, unramped curb or turn on a slope. Within the strange limits of this strange assignment, it seems Singer is doing all he can to make me comfortable. He asks what I thought of the students' questions. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 17 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM ''They were fine, about what I expected. I was a little surprised by the question about meat eating.'' ''I apologize for that. That was out of left field. But -- I think what he wanted to know is how you can have such high respect for human life and so little respect for animal life.'' ''People have lately been asking me the converse, how you can have so much respect for animal life and so little respect for human life.'' ''And what do you answer?'' ''I say I don't know. It doesn't make a lot of sense to me.'' ''Well, in my view--'' ''Look. I have lived in blissful ignorance all these years, and I'm not prepared to give that up today.'' ''Fair enough,'' he says and proceeds to recount bits of Princeton history. He stops. ''This will be of particular interest to you, I think. This is where your colleagues with Not Dead Yet set up their blockade.'' I'm grateful for the reminder. My brothers and sisters were here before me and behaved far more appropriately than I am doing. A van delivers Carmen and me early for the evening forum. Singer says he hopes I had a pleasant afternoon. Yes, indeed. I report a pleasant lunch and a very pleasant nap, and I tell him about the Christopher Reeve Suite in the hotel, which has been remodeled to accommodate Reeve, who has family in the area. ''Do you suppose that's the $600 accessible suite they told me about?'' https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 18 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM ''Without doubt. And if I'd known it was the Christopher Reeve Suite, I would have held out for it.'' ''Of course you would have!'' Singer laughs. ''And we'd have had no choice, would we?'' We talk about the disability rights critique of Reeve and various other topics. Singer is easy to talk to, good company. Too bad he sees lives like mine as avoidable mistakes. I'm looking forward to the soft vegetarian meal that has been arranged; I'm hungry. Assisted suicide, as difficult as it is, doesn't cause the kind of agony I felt discussing disability-based infanticide. In this one, I understand, and to some degree can sympathize with, the opposing point of view -- misguided though it is. My opening sticks to the five-minute time limit. I introduce the issue as framed by academic articles Not Dead Yet recommended for my use. Andrew Batavia argues for assisted suicide based on autonomy, a principle generally held high in the disability rights movement. In general, he says, the movement fights for our right to control our own lives; when we need assistance to effect our choices, assistance should be available to us as a matter of right. If the choice is to end our lives, he says, we should have assistance then as well. But Carol Gill says that it is differential treatment -- disability discrimination -- to try to prevent most suicides while facilitating the suicides of ill and disabled people. The socialscience literature suggests that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people, compared with our own assessments of our lives. The case for assisted suicide rests on stereotypes that our lives are inherently so bad that it is entirely rational if we want to die. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 19 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM I side with Gill. What worries me most about the proposals for legalized assisted suicide is their veneer of beneficence -- the medical determination that, for a given individual, suicide is reasonable or right. It is not about autonomy but about nondisabled people telling us what's good for us. In the discussion that follows, I argue that choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn't offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality -- dependence, institutional confinement, being a burden -- are entirely curable. Singer, seated on my right, participates in the discussion but doesn't dominate it. During the meal, I occasionally ask him to put things within my reach, and he competently complies. I feel as if I'm getting to a few of them, when a student asks me a question. The words are all familiar, but they're strung together in a way so meaningless that I can't even retain them -- it's like a long sentence in Tagalog. I can only admit my limitations. ''That question's too abstract for me to deal with. Can you rephrase it?'' He indicates that it is as clear as he can make it, so I move on. A little while later, my right elbow slips out from under me. This is awkward. Normally I get whoever is on my right to do this sort of thing. Why not now? I gesture to Singer. He leans over, and I whisper, ''Grasp this wrist and pull forward one inch, without lifting.'' He follows my instructions to the letter. He sees that now I can again reach my food with my fork. And he may now understand what I was saying a minute ago, that most of the assistance disabled people need does not demand medical training. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 20 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM A philosophy professor says, ''It appears that your objections to assisted suicide are essentially tactical.'' ''Excuse me?'' ''By that I mean they are grounded in current conditions of political, social and economic inequality. What if we assume that such conditions do not exist?'' ''Why would we want to do that?'' ''I want to get to the real basis for the position you take.'' I feel as if I'm losing caste. It is suddenly very clear that I'm not a philosopher. I'm like one of those old practitioners who used to visit my law school, full of bluster about life in the real world. Such a bore! A once-sharp mind gone muddy! And I'm only 44 -- not all that old. The forum is ended, and I've been able to eat very little of my puréed food. I ask Carmen to find the caterer and get me a container. Singer jumps up to take care of it. He returns with a box and obligingly packs my food to go. When I get home, people are clamoring for the story. The lawyers want the blowby-blow of my forensic triumph over the formidable foe; when I tell them it wasn't like that, they insist that it was. Within the disability rights community, there is less confidence. It is generally assumed that I handled the substantive discussion well, but people worry that my civility may have given Singer a new kind of legitimacy. I hear from Laura, a beloved movement sister. She is appalled that I let Singer provide even minor physical assistance at the dinner. ''Where was your assistant?'' she wants to know. How could I put myself in a relationship with Singer that made him appear so human, even kind? https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 21 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM I struggle to explain. I didn't feel disempowered; quite the contrary, it seemed a good thing to make him do some useful work. And then, the hard part: I've come to believe that Singer actually is human, even kind in his way. There ensues a discussion of good and evil and personal assistance and power and philosophy and tactics for which I'm profoundly grateful. I e-mail Laura again. This time I inform her that I've changed my will. She will inherit a book that Singer gave me, a collection of his writings with a weirdly appropriate inscription: ''To Harriet Johnson, So that you will have a better answer to questions about animals. And thanks for coming to Princeton. Peter Singer. March 25, 2002.'' She responds that she is changing her will, too. I'll get the autographed photo of Jerry Lewis she received as an M.D.A. poster child. We joke that each of us has given the other a ''reason to live.'' I have had a nice e-mail message from Singer, hoping Carmen and I and the chair got home without injury, relaying positive feedback from my audiences -and taking me to task for a statement that isn't supported by a relevant legal authority, which he looked up. I report that we got home exhausted but unharmed and concede that he has caught me in a generalization that should have been qualified. It's clear that the conversation will continue. I am soon sucked into the daily demands of law practice, family, community and politics. In the closing days of the state legislative session, I help get a bill passed that I hope will move us one small step toward a world in which killing won't be such an appealing solution to the ''problem'' of disability. It is good to focus on this kind of work. But the conversations with and about Singer continue. Unable to muster the appropriate moral judgments, I ask myself a tough question: am I in fact a silly little lady whose head is easily turned by a man who gives her a https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 22 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM kind of attention she enjoys? I hope not, but I confess that I've never been able to sustain righteous anger for more than about 30 minutes at a time. My view of life tends more toward tragedy. The tragic view comes closest to describing how I now look at Peter Singer. He is a man of unusual gifts, reaching for the heights. He writes that he is trying to create a system of ethics derived from fact and reason, that largely throws off the perspectives of religion, place, family, tribe, community and maybe even species -- to ''take the point of view of the universe.'' His is a grand, heroic undertaking. But like the protagonist in a classical drama, Singer has his flaw. It is his unexamined assumption that disabled people are inherently ''worse off,'' that we ''suffer,'' that we have lesser ''prospects of a happy life.'' Because of this all-toocommon prejudice, and his rare courage in taking it to its logical conclusion, catastrophe looms. Here in the midpoint of the play, I can't look at him without fellow-feeling. I am regularly confronted by people who tell me that Singer doesn't deserve my human sympathy. I should make him an object of implacable wrath, to be cut off, silenced, destroyed absolutely. And I find myself lacking a logical argument to the contrary. I am talking to my sister Beth on the phone. ''You kind of like the monster, don't you?'' she says. I find myself unable to evade, certainly unwilling to lie. ''Yeah, in a way. And he's not exactly a monster.'' ''You know, Harriet, there were some very pleasant Nazis. They say the SS guards went home and played on the floor with their children every night.'' https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 23 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM She can tell that I'm chastened; she changes the topic, lets me off the hook. Her harshness has come as a surprise. She isn't inclined to moralizing; in our family, I'm the one who sets people straight. When I put the phone down, my argumentative nature feels frustrated. In my mind, I replay the conversation, but this time defend my position. ''He's not exactly a monster. He just has some strange ways of looking at things.'' ''He's advocating genocide.'' ''That's the thing. In his mind, he isn't. He's only giving parents a choice. He thinks the humans he is talking about aren't people, aren't 'persons.''' ''But that's the way it always works, isn't it? They're always animals or vermin or chattel goods. Objects, not persons. He's repackaging some old ideas. Making them acceptable.'' ''I think his ideas are new, in a way. It's not old-fashioned hate. It's a twisted, misinformed, warped kind of beneficence. His motive is to do good.'' ''What do you care about motives?'' she asks. ''Doesn't this beneficent killing make disabled brothers and sisters just as dead?'' ''But he isn't killing anyone. It's just talk.'' ''Just talk? It's talk with an agenda, talk aimed at forming policy. Talk that's getting a receptive audience. You of all people know the power of that kind of talk.'' ''Well, sure, but--'' ''If talk didn't matter, would you make it your life's work?'' https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 24 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM ''But,'' I say, ''his talk won't matter in the end. He won't succeed in reinventing morality. He stirs the pot, brings things out into the open. But ultimately we'll make a world that's fit to live in, a society that has room for all its flawed creatures. History will remember Singer as a curious example of the bizarre things that can happen when paradigms collide.'' ''What if you're wrong? What if he convinces people that there's no morally significant difference between a fetus and a newborn, and just as disabled fetuses are routinely aborted now, so disabled babies are routinely killed? Might some future generation take it further than Singer wants to go? Might some say there's no morally significant line between a newborn and a 3-year-old?'' ''Sure. Singer concedes that a bright line cannot be drawn. But he doesn't propose killing anyone who prefers to live.'' ''That overarching respect for the individual's preference for life -might some say it's a fiction, a fetish, a quasi-religious belief?'' ''Yes,'' I say. ''That's pretty close to what I think. As an atheist, I think all preferences are moot once you kill someone. The injury is entirely to the surviving community.'' ''So what if that view wins out, but you can't break disability prejudice? What if you wind up in a world where the disabled person's 'irrational' preference to live must yield to society's 'rational' interest in reducing the incidence of disability? Doesn't horror kick in somewhere? Maybe as you watch the door close behind whoever has wheeled you into the gas chamber?'' ''That's not going to happen.'' ''Do you have empirical evidence?'' she asks. ''A logical argument?'' https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 25 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM ''Of course not. And I know it's happened before, in what was considered the most progressive medical community in the world. But it won't happen. I have to believe that.'' Belief. Is that what it comes down to? Am I a person of faith after all? Or am I clinging to foolish hope that the tragic protagonist, this one time, will shift course before it's too late? I don't think so. It's less about belief, less about hope, than about a practical need for definitions I can live with. If I define Singer's kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value. That definition would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories and share the grunt work of local politics. It would reach some of my family and most of my nondisabled friends, people who show me personal kindness and who sometimes manage to love me through their ignorance. I can't live with a definition of ultimate evil that encompasses all of them. I can't refuse the monster-majority basic respect and human sympathy. It's not in my heart to deny every single one of them, categorically, my affection and my love. The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world. As a disability pariah, I must struggle for a place, for kinship, for community, for connection. Because I am still seeking acceptance of my humanity, Singer's call to get past species seems a luxury way beyond my reach. My goal isn't to shed https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 26 of 27 Unspeakable Conversations - The New York Times 8/30/20, 5)32 PM the perspective that comes from my particular experience, but to give voice to it. I want to be engaged in the tribal fury that rages when opposing perspectives are let loose. As a shield from the terrible purity of Singer's vision, I'll look to the corruption that comes from interconnectedness. To justify my hopes that Singer's theoretical world -- and its entirely logical extensions -- won't become real, I'll invoke the muck and mess and undeniable reality of disabled lives well lived. That's the best I can do. https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html Page 27 of 27 1/15/2021 What Should Medicine Do When It Can’t Save You? | The New Yorker Annals of Medicine August 2, 2010 Issue Letting Go What should medicine do when it can’t save your life? By Atul Gawande July 26, 2010 Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left. Photograph by Phillip Toledano, “Birthday Balloon,” from “Days with My Father” (2008) S ara Thomas Monopoli was pregnant with her rst child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was lled with uid. https://www.newyorker.com/magazine/2010/08/02/letting-go-2 1/20 1/15/2021 What Should Medicine Do When It Can’t Save You? | The New Yorker A sample of the uid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying. The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor oor. It was a warm Monday in June, 2007. She took Rich’s hands, and they tried to absorb what they had heard. Monopoli was thirty-four. She had never smoked, or lived with anyone who had. She exercised. She ate well. The diagnosis was bewildering. “This is going to be O.K.,” Rich told her. “We’re going to work through this. It’s going to be hard, yes. But we’ll gure it out. We can nd the right treatment.” For the moment, though, they had a baby to think about. “So Sara and I looked at each other,” Rich recalled, “and we said, ‘We don’t have cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s exciting. And we’re going to enjoy our baby.’ ” On Tuesday, at 8:55 . ., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy. The next day, Sara underwent blood tests and body scans. Dr. Paul Marcoux, an oncologist, met with her and her family to discuss the ndings. He explained that she had a non-small cell lung cancer that had started in her left lung. Nothing she had done had brought this on. More than fteen per cent of lung cancers—more than people realize—occur in non-smokers. Hers was advanced, having metastasized to multiple lymph nodes in her chest and its lining. The cancer was inoperable. But there were chemotherapy options, notably a relatively new drug called Tarceva, which targets a gene mutation commonly found in lung cancers of female non-smokers. Eighty- ve per cent respond to this drug, and, Marcoux said, “some of these responses can be long-term.” Words like “respond” and “long-term” provide a reassuring gloss on a dire reality. There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. They wanted to focus on “aggressively managing” this diagnosis. Sara was started on the Tarceva, which produced an itchy, acne-like facial rash and numbing tiredness. She also underwent a surgical procedure to drain the uid around her lung; when the uid kept coming back, a thoracic surgeon eventually placed a small, permanent tube in her chest, which she could drain whenever uid accumulated and interfered with her breathing. Three weeks after the delivery, she was admitted to the hospital with severe shortness of breath from a pulmonary embolism—a blood clot in an artery to the lungs, which is dangerous but not uncommon in cancer patients. She was started on a blood thinner. Then test results showed that her tumor cells did not have the mutation that Tarceva targets. When Marcoux told Sara that the drug wasn’t going to work, she had an almost violent physical reaction to the news, bolting to the bathroom in mid-discussion with a sudden bout of diarrhea. Dr. Marcoux recommended a different, more standard chemotherapy, with two drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus https://www.newyorker.com/magazine/2010/08/02/letting-go-2 2/20 1/15/2021 What Should Medicine Do When It Can’t Save You? | The New Yorker gemcitabine. Response rates, he said, were still very good for patients on this therapy. She spent the remainder of the summer at home, with Vivian and her husband and her parents, who had moved in to help. She loved being a mother. Between chemotherapy cycles, she began trying to get her life back. Then, in October, a CT scan showed that the tumor deposits in her left lung and chest and lymph nodes had grown substantially. The chemotherapy had failed. She was switched to a drug called pemetrexed. Studies found that it could produce markedly longer survival in some patients. In reality, however, only a small percentage of patients gained very much. On average, the drug extended survival by only two months—from eleven months to thirteen months—and that was in patients who, unlike Sara, had responded to rst-line chemotherapy. She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair. A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right; to the liver; to the lining of her abdomen; and to her spine. Time was running out. T his is the moment in Sara’s story that poses a fundamental question for everyone living in the era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer —or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do? The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty- ve per cent of all Medicare spending is for the ve per cent of patients who are in their nal year of life, and most of that money goes for care in their last couple of months which is of little apparent bene t. Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, ve-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop. The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made. https://www.newyorker.com/magazine/2010/08/02/letting-go-2 3/20 1/15/2021 What Should Medicine Do When It Can’t Save You? | The New Yorker Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural ori ces and a few arti cial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the nal phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness. Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the nal stage. “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.” In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical de brillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s nal days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, uorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.” People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness nd that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives. F or all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes, and died within two days. Rutherford Hayes had a heart attack and died three days later. Some deadly illnesses took a longer course: James Monroe and Andrew Jackson died from the months-long consumptive process of what appears to have been tuberculosis; Ulysses Grant’s oral cancer took a year to kill him; and James Madison was bedridden for two years before dying of “old age.” But, as the end-of-life researcher Joanne Lynn has observed, people usually experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning—and you either got through it or you didn’t. https://www.newyorker.com/magazine/2010/08/02/letting-go-2 4/20 1/15/2021 What Should Medicine Do When It Can’t Save You? | The New Yorker Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their nal hours. Last words came to hold a particular place of reverence. These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly? I once cared for a woman in her sixties who had severe chest and abdominal pain from a bowel obstruction that had ruptured her colon, caused her to have a heart attack, and put her into septic shock and renal failure. I performed an emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented her coronary arteries. We put her on dialysis, a ventilator, and intravenous feeding, and stabilized her. After a couple of weeks, though, it was clear that she was not going to get much better. The septic shock had left her with heart and respiratory failure as well as dry gangrene of her foot, which would have to be amputated. She had a large, open abdominal wound with leaking bowel contents, which would require twice-a-day cleaning and dressing for weeks in order to heal. She would not be able to eat. She would need a tracheotomy. Her kidneys were gone, and she would have to spend three days a week on a dialysis machine for the rest of her life. She was unmarried and without children. So I sat with her sisters in the I.C.U. family room to talk about whether we should proceed with the amputation and the tracheotomy. “Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die. O ne Friday morning this spring, I went on patient rounds with Sarah Creed, a nurse with the hospice service that my hospital system operates. I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip. It was not of this brown-haired and blue-eyed former I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet street in Boston’s Mattapan neighborhood. “Hi, Lee,” Creed said when she entered the house. “Hi, Sarah,” Cox said. She was seventy-two years old. She’d had several years of declining health due to congestive heart failure from a heart attack and pulmonary brosis, a progressive and irreversible lung disease. Doctors tried slowing the disease with steroids, but they didn’t work. She had cycled in and out of the hospital, each time in worse shape. Ultimately, she accepted https://www.newyorker.com/magazine/2010/08/02/letting-go-2 5/20 1/15/2021 What Should Medicine Do When It Can’t Save You? | The New Yorker hospice care and moved in with her niece for support. She was dependent on oxygen, and unable to do the most ordinary tasks. Just answering the door, with her thirty-foot length of oxygen tubing trailing after her, had left her winded. She stood resting for a moment, her lips pursed and her chest heaving. Creed took Cox’s arm gently as we walked to the kitchen to sit down, asking her how she had been doing. Then she asked a series of questions, targeting issues that tend to arise in patients with terminal illness. Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble with confusion, anxiety, or restlessness? Had her shortness of breath grown worse? Was there chest pain or heart palpitations? Abdominal discomfort? Trouble with bowel movements or urination or walking? She did have some new troubles. When she walked from the bedroom to the bathroom, she said, it now took at least ve minutes to catch her breath, and that frightened her. She was also getting chest pain. Creed pulled a stethoscope and a blood-pressure cuff from her medical bag. Cox’s blood pressure was acceptable, but her heart rate was high. Creed listened to her heart, which had a normal rhythm, and to her lungs, hearing the ne crackles of her pulmonary brosis but also a new wheeze. Her ankles were swollen with uid, and when Creed asked for her pillbox she saw that Cox was out of her heart medication. She asked to see Cox’s oxygen equipment. The liquid-oxygen cylinder at the foot of the neatly made bed was lled and wo...
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