Authors: Sherwin B Nuland
How We Die (32 page)
Decades before KS became associated in physicians’ minds with HIV infection, it was being recognized too often for coincidence as an accompaniment of various forms of the lymphatic cancer called lymphoma. Today, KS and lymphoma, not necessarily concomitant, are the two leading malignancies that prey on people with AIDS. Except for reasons of immunodeficiency, the relationship between the two has not yet been clarified. AIDS-related lymphoma, which most often involves the central nervous system, gastrointestinal tract, liver, and bone marrow, is no less aggressive than KS.
Unlike any other pestilence previously known to humankind, HIV does not limit its array of deadly options. There are only so many ways for a pancreatic cancer, for example, to kill; when a heart fails, or a kidney, very specific events take place; a deadly stroke takes aim at a single focus in the brain, starting its victim down a well-marked road to deterioration. Not so with HIV—it offers seemingly endless choices as one organ system and then another is set upon by a wide assortment of microbes and cancers. At autopsy, the only consistently predictable finding is a severe depletion of the lymphatic tissue that is part of the immune system. At the dissecting table, even members of the AIDS care team are often surprised by unexpected areas of involvement and the degree to which the tissues of their patient have been laid waste.
Respiratory failure, sepsis, destruction of brain tissue by tumor or infection—these are the more common immediate causes of death; some patients bleed into the brain, or the lung, or even the gastrointestinal tract, and some succumb to widespread tuberculosis or sarcoma; organs fail, tissues bleed, infection is everywhere. And invariably, there is malnutrition. No matter the magnitude of methods activated to fight it, starvation cannot be prevented. A care unit for terminal AIDS patients is peopled by emaciated, wraithlike men and women whose shrunken eyes look dully out from cavernous sockets, their faces often without expression, their bodies wizened with the shriveled frailty of prematurely advanced age. Most are beyond courage. The virus has robbed them of their youth, and it is about to rob them of the rest of their lives.
Autopsy pathologists distinguish between two separate designations for the cause of death: They refer to the proximate cause of death and the immediate cause of death (officially known by the acronyms PCOD and ICOD). For all of these young people, the PCOD will be AIDS—the specific ICOD seems hardly to matter. The quantity of suffering is the same for all, even though the quality varies. I talked about these matters not long ago with Dr. Peter Selwyn, one of the several Yale professors whose single-minded devotion to the care of AIDS patients has animated the efforts of many of the residents and students at our school. Despite his authoritative contributions to current understanding of HIV infection, he is a reticent man who expresses large concepts with few words. He said simply, “My patients die, I think, when their time comes.” It seemed an incongruous statement, floating there in the company of the biomedical complexities still hanging in the air from our long discussion of molecular biology and bedside management. And yet it made sense. At the end, he said, so many things go wrong that there comes a time when the depleted forces of gasping life just seem to give out. Death comes with sepsis and organ failure and starvation and with the final departure of the spirit, all at once. Selwyn has seen it many times, and he knows.
I am a hundred miles away from the hospital. This is one of those unexpected afternoons in mid-autumn when everything under nature’s cloudless blue sky has become exactly the way it should be, but almost never is. The summer just passed was rainy, and perhaps for that reason the hills surrounding my friend’s farm have taken on those heartbursting effusions of color that are almost more than my city-bred soul can comprehend or contain. Nature is being kind without knowing it, as nature can be cruel without knowing it. At such an instant, it seems as though no other day will ever attain the impossible splendor of this one. Already, I feel a nostalgia for today even as I live it. I am obsessed with an urge to memorize the image of every tree because I know its blazing flourish will begin to fade as soon as tomorrow, and never appear precisely like this again. When a thing is beautiful and good, it should be seen so clearly, and held so snugly, that no one will ever forget how it looks and how it feels.
I am sitting in the sunny kitchen of John Seidman’s farmhouse, built a century ago in the midst of twenty acres of fertile land, near the town of Lomontville in upper New York State. In an upstairs bedroom, ten years ago, John’s best friend, David Rounds, died in his arms at the end of a long and difficult illness. John and David were more than best friends; they shared a love that was meant to endure. But cancer determined otherwise. David was taken from John, and from those others of us who also loved him in our variety of ways, at a time when the future seemed secure and certain for both of them. David had won a Tony Award for Best Supporting Actor on Broadway only two years before, and John’s stage career was showing increasing promise, In that farmhouse, grief was a long time in passing before life resumed its proper rhythms.
I have known John Seidman for almost twenty years, and Sarah, my wife, shared a house with him and David long before that. He has been so close a friend to my family that my two youngest children call him Uncle. And yet there is a large part of his life that he and I have never discussed and about which I know almost nothing. On this splendorous day just before the fleeting grandeur of autumn disappears, the two of us are sitting together and we are talking about death—and AIDS.
Death has become much too familiar to John. It is as though the loss of David was the prelude to a succession of sorrows, during which friends, colleagues in the theater, and even mere acquaintances sickened, withered, and died. In the past decade, John has repeated with one after another the cycle of discovery of seropositivity, disease progression, watchful caregiving, descent to terminal illness, and death—again and again. In his early forties, he is one of tragedy’s witnesses. There have been many others, and more than a few are now dead. The young men, and the few young women, who have companioned one another to the grave have been taken in the most productive years of their lives—what might have been and what should have been is lost. The vigor, the talent, and undoubtedly the genius of a generation are diminished, and so is our society.
We talk about John’s friend Kent Griswold, who died in 1990 with toxoplasmosis and a trio of the common acronyms: CMV, MAI, and several bouts of PCP. Could there, I wanted to know, be any dignity in such a death? Can anything be salvaged of what once was, to bring a sense of himself to a man near his final hour, when he has been through so much? John thought a long time before answering, not because he had never considered the question before but because he wanted to be sure I would understand. The search for the elusive dignity, he said, may become irrelevant to the person who is dying—he has already carried out his struggle, and so often near the end, those around him can detect no recognizable conscious thought. Dignity is something, said John, that the survivors snatch—it is in their minds that it exists, if it exists at all:
Those of us left behind search for dignity in order not to think ill of ourselves. We try to atone for our dying friend’s inability to achieve a measure of dignity, perhaps by forcing it on him. It’s our one possible victory over the awful process of this kind of death. With a disease like AIDS, we need to deal with the sadness that comes with seeing a beloved friend lose his particularity, his uniqueness. Toward the end, he becomes just like the last person you saw go through this. You feel the sadness of seeing someone lose his individuality and become a clinical model.How much of the “good death” is for the person dying and how much for the person helping him? They’re obviously related to one another, but the question is how. To me, the concept of a good death is generally not something that can be managed very well for the one who is dying. A “good death” is only a relative thing, and what it really means is decreasing the mess. There isn’t much you can manage beyond trying to keep things neat and keep things painless—keeping someone from being alone. But leading up to those final moments, I think even the importance of one’s not being alone is something we infer.In retrospect, and in a way this sounds brutal, my own experience is that the only means we have of knowing if we have helped someone to a better death is whether or not we feel regret, or whether there is anything we feel sorry about or have left undone. If we can truly say that we missed no opportunity to do what we could, we’ve done the best job that’s possible. But even that, as an absolute achievement, only has absolute value to oneself. What you’re left with at the end is a situation that makes no one happy. The fact is that you’ve lost someone. There’s no way to feel good about it.The one bond we do need to believe is absolutely unbreakable in death is love. If love is what we feel we’re providing at those mysterious moments leading up to death, that, I suppose, is what makes a death “good,” if anything really can. But it’s such a subjective quality.
During his terminal weeks in the hospital, Kent was never alone. Whatever help they could or could not provide him at the final hours, there is no question that the constant presence of his friends eased him beyond what might have been achieved by the nursing staff, no matter the attentiveness of their care. It is impossible to observe homosexual AIDS patients without being struck by the way a circle of friends, not necessarily all gay, will almost predictably come together as a man’s family and assume responsibility for what a wife or parents might otherwise do. Dr. Alvin Novick, one of the earliest of America’s AIDS activists and among the most highly respected, has called this phenomenon of joined commitment “the caregiving surround.” It is a communal act of love, but it is also something more. John describes it:
AIDS is happening to people, especially in the case of gay men, who have created families by a conscious affinity—we have chosen the people who will be our family. Our sense of responsibility to each other isn’t based on the usual social forms. In many cases, the traditional family has rejected us. So the affinitive family is much more important.A lot of the greater community really do feel that what is happening to us
should
happen to us—it’s some kind of visitation on us for our sinful and abnormal ways. And so it’s in our mutual interest not to leave someone alone with that judgment of society. Those of us who suffer from some kind of self-loathing may find it very easy to think of AIDS as a form of punishment, but even those of us who don’t are aware that much of society does see it that way. To neglect our friends who have to deal with the disease themselves is somehow to abandon them to the judgment of the straight world.
Kent’s last few weeks, John tells me, were like those of so many other people with AIDS, and of so many people with any of the diseases that slowly eat away at life’s ebbing strength. Following the long months during which he had been forced to fight off one unanticipated problem after another, he seemed to undergo a suspension of any understanding that an incremental reduction of control was accompanying each new complication. As he stopped trying to comprehend, he also stopped struggling against the successive assaults, as though it seemed now less important to resist—there was no longer any point to it. Or perhaps the effort required to grasp the significance of events simply sapped too much of his limited energy.
The details of a latest onslaught lost their urgency. There are those who would call such exhausted indifference acceptance, but the very word implies a welcoming. Perhaps it is rather the recognition of defeat, the involuntary acknowledgment that the time has come to quit fighting. Most of the dying, not only of AIDS but of any prolonged sickness, seem unaware that they have reached this stage. For some few, mental faculties remain so intact that they are able to consciously decide, but much more often the decision is made for them by a lapse into a degree of lessened sensibility or even coma. This is the phase of dying in which William Osler and Lewis Thomas seldom saw aught but serenity. For most of us, it will come much too late to give consolation to those who watch at the bedside.
While Kent had been less sick, he had sometimes spoken of his concern about how much physical pain he would be able to withstand, how uncomfortable his last weeks might be. He expressed a wish to find that critical moment when he could knowingly make up his own mind whether to continue the struggle. No one around him could tell for sure whether that wish was granted.
An influential friend had somehow gotten Kent a commodious private room in the hospital, and in that large space he appeared daily to become smaller. He seemed almost hard to find. In John’s words, “He dwindled further and further beneath the sheets.” Even when he was at his strongest, Kent needed help to get to the bathroom, but the rest of the time he was completely bedridden. Never a large man, he seemed now to be disappearing. As John describes Kent’s withering, I think again of Thomas Browne watching his dying friend go through the same process 350 years earlier: “He came to be almost half himself and left a great part behind him which he carried not to the grave.”
Because of Kent’s toxoplasmosis, he was losing cognition to the point where he was unable to comprehend what was going on around him. CMV retinitis blinded first one eye and then the other. He had by then wasted to such a degree that it was impossible to read his face or decipher his expressions—was he smiling, or was it a grimace that twisted the corners of his silent mouth? John says it so well: “A form of communication is lost when someone is so diminished.” The dying man’s whole body had grown very dark, especially his face.
Other books
Jennie by Douglas Preston
Chosen by Swan, Sarah
Love and Let Spy (Lord and Lady Spy) by Shana Galen
The Walrus of Death: A Short Story by Orr, Steeven R.
Glitch by Heather Anastasiu
White Crow by Marcus Sedgwick
His Dark Desires: A BWWM Billionaire Romance by Evans, Nina
The Killer of Pilgrims by Susanna Gregory
Bears Repeating by Flora Dare
Final Disposition by Ken Goddard