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Authors: Sherwin B Nuland

How We Die (33 page)

BOOK: How We Die
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Early on, Kent had made it clear that no aggressive treatment was to be used once it became evident that it would be futile. Guided by that, his “caregiving surround” consulted with the doctors, and together they tried to make correct decisions as each succeeding necessity arose. Finally, there were no longer any decisions to make. It had become so clear—there was nothing further to be done. It was just as Peter Selwyn says—Kent’s time had come.
Kent was less and less conscious of any sort of discomfort. No longer was it important that he receive medical help of any kind. “It became our mission just to keep him surrounded, just to keep him connected, at least as much as he was capable of sensing any connection. The most important thing was that we didn’t want him to be alone.” At the end, Kent just slipped away. John now comes to the final part of the story.
I wasn’t in New York when he died—I was up here at the farm for a few days. I got off a bus at the Port Authority and called in to my machine. There was a message that Kent was gone, and it shocked me. When I’d last seen him, he wasn’t recognizably living, certainly not recognizably Kent. Even though he was expected to die any minute, somehow the idea that he was actually gone—I suppose the shock had to do with the fact that after all the time I had spent with him I had to find out about it in that rotten way—standing there alone in a grimy phone booth, hearing it from my answering machine.
Kent died among companions who had helped sustain him in his last two years of life. He was not one of the many homosexuals and drug abusers who have been ostracized by their families—he was the only child of older parents and they had died years before. Without the devotion of his friends, his death, and his life as well, would have been soon forgotten.
Nothing that has been written here should be construed to imply that traditional families are only seldom involved in the care of their sons and daughters (or husbands and wives) dying of AIDS. Quite the opposite is true. Gerald Friedland describes the return, the reuniting of parents, mothers in particular, with the children whose lives and friends they had years before rejected. This is true not only of the families of gay men but of those of drug abusers as well. Of course, not all homosexuals and not all drug abusers have separated from their roots in the first place, and so it is not uncommon that the last months of a young man or woman with AIDS are spent in the nurturing care of siblings or parents, sometimes together with a small group of their child’s friends or a lover. It is usually a great deal easier for a middle-class parent to leave employment or a distant home than it would be for members of a family from an inner-city ghetto or barrio, where even a day’s absence from work means loss not only of income but possibly of the low-paying job itself. I have been told of mothers with as many as four children at once dying of AIDS—the cruelty of the virus reaches magnitudes beyond any imaginable reality.
At the bedsides of dying young people watch mothers and wives, husbands and lovers—sisters, brothers, and friends—doing what they can to buffer the onslaughts of messy death. As in ages past when a child is mortally ill, murmuring voices of parents are heard, sometimes barely audible in the hush that precedes a life’s departure. They are soft words of encouragement and they are prayers. In English or in Spanish, and in other languages throughout the world, there has been repeated so many times one variant or another of the words spoken by the biblical King David as he wept over the body of his slain son, the rebellious Absalom, from whom he had been for so many years estranged:
O my son Absalom,
my son, my son Absalom!
Would God I had died for thee,
Oh Absalom, my son, my son.
Gerald Friedland speaks of the “inversion of the expected life cycle”—parents are burying their children. An aberration has recurred from earlier centuries, just when we had complacently concluded that our science had conquered it. Not only the virus is turned back to front but so is the pattern of natural logic by which the young should bury the old. There is finally a metaphoric lesson here—in the therapy that is at present our best means of inhibiting the propagation of HIV: With AZT and other drugs, we try to stop the reverse transcriptase, and thereby stop the reversal, too, that turns the cycle of life on its head. Our scheme works, but not as well as we would like, and death continues to pursue the young and even the very young, while their elders can only stand by and mourn.
What dignity or meaning can be snatched from such a death will never be known, except by those whose lives have embraced the life just lost. The young people who provide the hospital care for the young people who die—and here I refer not only to doctors and nurses but to every one of those dedicated personnel—look on and wonder that such selflessness exists in a world they have been taught is cynical. Their own daily deeds belie the cynicism—they, too, are heroes of a sort. Their heroism is contemporary and unique to the path they have chosen as health workers who conquer their own fears and vanquish their feelings of vulnerability for the sake of those afflicted with AIDS. They make no moral judgments—they do not distinguish between social classes, manners of infection, or memberships in those categories called risk groups. Camus described it well: “What’s true of all the evils in the world is true of plague as well. It helps men to rise above themselves.”
In the midst of the stories that still come to us of unwilling physicians here or HIV-phobic surgeons there (and the more than 20 percent of surveyed American medical residents who would treat people with HIV but if given the opportunity would choose not to), it is heartening to know that the AIDS-affected are being watched over by people like these. For our children who care for our children stricken by HIV, the burden is made still greater with the sorrow of being stewards to the mortality of men and women their own age or perhaps only a decade older. In that injustice lies the source of the most outraged of those many reproaches we hurl at insensate nature, whose mindless tinkering created HIV—that it robs us of great pieces of the fabric from which we are entitled to fashion our future. Of the youthful legions lost to AIDS, it is proper to speak the words written seventy years ago by the neurosurgeon Harvey Cushing as he grieved over his companions martyred in World War I. They are, Cushing lamented, “doubly dead in that they died so young.”
X
The Malevolence of Cancer
Once upon a time, there was a little chimney-sweep, and his name was Tom. That is a short name, and you have heard it before, so you will not have much trouble in remembering it. He lived in a great town in the North country, where there were plenty of chimneys to sweep, and plenty of money for Tom to earn and his master to spend. He could not read nor write, and he did not care to do either; and he never washed himself, for there was no water up the court where he lived. He had never been taught to say his prayers. He never had heard of God, or Christ, except in words which you have never heard, and which it would have been well if he had never heard. He cried half his time and laughed the other half. He cried when he had to climb the dark flues, rubbing his poor knees and elbows raw; and when the soot got into his eyes, which it did every day in the week; and when he had not enough to eat, which happened every day in the week likewise.
So begins Charles Kingsley’s 1863 children’s classic,
The Water Babies
. Tom was what the English gentry euphemistically called a “climbing boy.” His duties required no lengthy training and there were no prerequisites for entering the profession. Most recruits took up the depressing occupation between the ages of four and ten. Each day’s work was launched simply enough: “after a whimper or two, and a kick from his master, into the grate Tom went, and up the chimney.”
Those chimneys bore little resemblance to the straight uprights of a later architectural style. Even by Kingsley’s day, the mid-1800s, they had become more direct in their ascent than they had been when the British surgeon Percivall Pott turned his attention to their dangers in 1775. In Pott’s time they not only were tortuous and irregular but had an annoying habit of running in a horizontal direction for short distances before resuming their intended vertical course. The result of all the structural peregrinations was that there were plenty of nooks, crannies, and flat surfaces upon which soot would accumulate. Not only that, but a climbing boy’s squirming en route up the flue made it quite likely that he would abrade the skin surfaces on various parts of his body, especially those that projected or hung.
The word
hung
is used deliberately here to mean exactly what it sounds like; more often than not, the little climbers did their grimy work without the protection of any layer of clothing between themselves and the filthy walls along which they scrambled. They were quite naked. There was a good and sound tricks-of-the-trade reason for the vocational nudity, or at least the boys’ masters thought it was good and sound. The chimneys were very narrow, measuring approximately twelve to twenty-four inches in diameter. Why go to all the trouble of finding such small, skinny lads if they were only going to use up valuable space by wearing clothes? So the master sweep recruited the tiniest boys he could find, taught them the rudiments of chimney-shinnying, and kicked their bare, coal-blackened bottoms into the gratings each morning, shouting them up the tight, airless shafts to start the day’s work.
The problems were compounded by the personal habits of the poor sweeps themselves. Coming as they did from the very lowest stratum of the English social structure, they had never learned to value bodily cleanliness. Moreover, many of these unfortunate lads, in spite of being exposed to such a great deal of hearth, had never known much home. There had been no loving maternal hands to guide them, or even to pull them by the ears to a warm tub. By and large, they were abandoned urchins. The tar-laden particles remained buried in the wrinkles and folds of their scrotal skin for months at a time, relentlessly eating away at their lives while the cruelties of their masters ate away at their souls.
Percivall Pott (1714–1788) was the most distinguished London surgeon of his generation, and he knew a great deal about the difficult life of the young English sweeps. He observed that “The fate of these people seems singularly hard: in their early infancy, they are most frequently treated with great brutality, and almost starved with cold and hunger; they are thrust up narrow, and sometimes hot chimnies, where they are bruised, burned, and almost suffocated; and when they get to puberty, become peculiarly liable to a most noisome, painful, and fatal disease.” These words were written in 1775; they appeared in a brief section of a much longer article by Pott, entitled “Chirurgical observations relative to the cataract, the polypus of the nose, the cancer of the scrotum, the different kinds of ruptures and the modification of the toes and feet.” This article contains the first description ever recorded of an occupational malignancy. The disease took years to develop, but it sometimes began to make its appearance as early as the time of puberty. In the first decade of the nineteenth century, it was reported in a child of eight.
There is no doubt that Pott was describing a fatal malignancy that we would nowadays call squamous cell carcinoma. What he observed in the scrotums of his young patients was “a superficial, painful, ragged, ill-looking sore, with hard and rising edges: the trade call it the soot-wart. . . . It makes its way up the spermatic process into the abdomen. . . . When arrived within the abdomen, it affects some of the viscera, and then very soon becomes painfully destructive.”
Pott well knew that the scrotal cancer, except in the few cases when it was surgically excised at a very early stage, killed every one of its victims. He had attempted surgical cure over and over again, even though it meant, in those horrible days before the invention of anesthesia, that he had to strap a screaming boy down onto a table and keep him immobilized in the grip of powerful assistants. Eligibility for the operation was restricted to those boys in whom the ulcerating process was still limited to one side.
The procedure perpetrated as great an assault on the psyche as it did on the soma, consisting as it did of slashing away as rapidly as possible the testicle and half the scrotum of these unfortunate adolescents. Bleeding tissues were treated by pressing a red-hot iron directly into them. Attempting to stitch the hideous charred wounds always caused a pus-laden infection, so the surgical area was left open to drain sloughed detritus and fluid throughout the long months of slow healing.
Pott’s results did not often justify the ordeal. He was disheartened by long-term follow-up studies of his patients: “But though the sores, after such operation, have in some instances healed kindly, and the patients have gone from the hospital seemingly well, yet, in the space of a few months, it has generally happened, that they have returned either with some disease in the other testicle, or in the glands of the groin, or with such wan complexions, such a total loss of strength, and such frequent and acute internal pains, as have sufficiently proved a diseased state of some of the viscera, and which have soon been followed by a painful death.” Although Pott’s commas may be extravagant, his description is not. If anything, he understates the miseries with which these boys went to the grave.
Pott recognized that this dreadful courier of death began as an abnormal growth restricted to a specific location, a process which only later began that relentless creeping course of foul ulceration by which it infiltrated its rotting pathway into the structures around it. He published his case studies at a time favorable to the formulation of a thesis that involved the influence of intrusive foreign materials on the body. A few prominent medical theorists had recently begun to introduce the concept that living tissue requires a stimulus, which they called an “irritation,” in order to cause it to perform its normal functions. From the principle of irritation, it was only a short step to the concept that diseased organs are sick because a part or all of them have become inflamed—in other words, overirritated. Pott argued that cancer in the private parts of chimney sweeps was the direct result of inflammation caused by the chemical action of soot.
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