Authors: Sherwin B Nuland
How We Die (28 page)
Ishmael was never alone in that room. The three girls were always with him, a constant presence watching over their adored father through the plastic facing of a three-by-two-foot blown-up photograph standing on the wide windowsill. There they were, three beautiful curly-haired kids in party dresses, smiling out at the world and their father on a day much happier than this. I gestured toward the picture, wordlessly asking Mary a question.
“Yes,” she replied, “the two older ones come here almost every day, but Carmen doesn’t bring the littlest one. The six-year-old just plays by herself around the foot of the bed—she doesn’t really understand. The ten-year-old cries; she stands by her father’s bedside every minute she’s here, wiping his face and stroking it, and she can’t stop crying. I try not to come into the room when they’re here—it’s more than I can bear.”
A Spanish Bible lay at the base of the children’s photograph. It was open to chapters 27 through 31 in the Book of Psalms, and several of the verses were marked in various colors of a Hi-Liter. I wrote down the verse numbers on an index card and looked them up when I got home:
27:9 Hide not Thy face from me, put not Thy servant away in anger. Thou art my help; reject me not, neither forsake me, O God of my salvation.27:10 For though my father and my mother forsake me, the Lord will take care of me.28:6 Blessed be the Lord, because He has heard the voice of my supplication.
It struck me that Ishmael is Hebrew for “God has heard.” The name derives from the words spoken by the Lord when He found Sarah’s maidservant Hagar in the wilderness after she fled from the wrath of her mistress: “Behold, thou art with child, and shalt bear a son, and shalt call his name Ishmael, because the Lord hath heard thy affliction.” God had found the mother and child by a well, to which He then gave a name bespeaking his recognition of their plight,
Be’er-la-hai-roi
, “The well where the One Who lives has seen.”
Be’er-la-hai-roi
, “The well where the One Who lives has seen.”
When the biblical Ishmael was fourteen, God again heard and saw, and this time it was the voice of the lad himself to which He responded, saving him from imminent death in the wilderness and promising to make him a great nation.
To the Ishmael lying in that bed, God seemed not to listen. Neither did He listen, nor did He seem to see. Certainly He did not act, in spite of the torment He observed. In this, Ishmael Garcia was like Job, in the face of whose suffering God was not only at first inactive but silent, too, as though having chosen to be without sight or hearing. If God heard Garcia’s entreaties or saw his anguish, He did not change His mind. He never does, in this fucking goddamn disease.
I prefer to believe that God has nothing to do with it. We are witnessing in our time one of those cataclysms of nature that have no meaning, no precedent, and, in spite of many claims to the contrary, no useful metaphor. Many churchmen, too, agree that God plays no role in such things. In their
Euthanasie en Pastoraat
quoted in the previous chapter, the bishops of the Dutch Reformed Church have not hesitated to deal quite specifically with the age-old question of divine involvement in unexplained human suffering: “The natural order of things is not necessarily to be equated with the will of God.” Their position is shared by a vast number of Christian and Jewish clergy of various denominations; any less forbearing stance is callous and a further indecency heaped upon people already too sorely tried. Although there is a great deal to be learned from the plague of AIDS, the lessons it teaches lie in the realms of science and society, and certainly not within the purview of religious elucidation. We are dealing not with a punishment but with a crime—one of those random crimes that nature now and then perpetrates on its own creatures. And nature, as Anatole France reminds us, is indifferent; it makes no distinction between good and evil.
Euthanasie en Pastoraat
quoted in the previous chapter, the bishops of the Dutch Reformed Church have not hesitated to deal quite specifically with the age-old question of divine involvement in unexplained human suffering: “The natural order of things is not necessarily to be equated with the will of God.” Their position is shared by a vast number of Christian and Jewish clergy of various denominations; any less forbearing stance is callous and a further indecency heaped upon people already too sorely tried. Although there is a great deal to be learned from the plague of AIDS, the lessons it teaches lie in the realms of science and society, and certainly not within the purview of religious elucidation. We are dealing not with a punishment but with a crime—one of those random crimes that nature now and then perpetrates on its own creatures. And nature, as Anatole France reminds us, is indifferent; it makes no distinction between good and evil.
There is a good deal more to AIDS than its bare clinical facts disclose. Although such a statement may be made about any disease, how much more so may it be said of this specific plague. But no matter the cultural and societal implications of AIDS, certain of its clinical and scientific manifestations must be understood before the full tragedy unfolds of how it kills its victims. The case of Ishmael Garcia is archetypical.
In February 1990, Garcia had his first positive blood test for HIV. The test was done as part of the evaluation of a nonhealing open sore on his left forearm, which brought him to the medical clinic of the Yale–New Haven Hospital. The infection was almost certainly caused by his intravenous drug habit. Because he felt quite well otherwise, especially when the sore cleared rapidly with a short outpatient course of antibiotics, he never kept any follow-up appointment beyond the one at which he was told his diagnosis. In January 1991, he developed a dry cough that gradually worsened over a period of several weeks. As the cough progressed, a feeling of tightness appeared in Ishmael’s chest, aggravated by coughing or a deep inspiration. After more than a month during which things gradually worsened, he began to be frightened by the appearance of two new symptoms: a fever, and shortness of breath brought on by even minor activity. When his breathing difficulty reached the point where it increased with no greater movement than walking around his small furnished room in New Haven’s barrio, he knew the time had come to go to the hospital.
In the emergency room, a chest X ray demonstrated that Ishmael’s lung fields were diffusely infiltrated with a thin whitish haze, representing the large areas in which infection of some sort was preventing proper aeration. Analysis of arterial blood revealed an abnormally low level of oxygen, reflecting inefficient uptake by the infected lung tissue. When the admitting resident looked into his feverish patient’s mouth, he saw the familiar clue exhibited by virtually every new case of AIDS—Ishmael’s tongue was coated with the telltale milky white fungus of thrush.
The chest findings were consistent with the form of pneumonia most common in AIDS, caused by a parasite called
Pneumocystis carinii
. Ishmael was admitted to the hospital and the doctors passed a snakelike viewing device called a bronchoscope down into the depths of his windpipe, from where a small sample was taken for culture and the microscopic study that revealed the tightly packed globular structures of
Pneumocystis
. He was given antifungal medication for the thrush and started on a course of a highly specific antibiotic for the pneumonia (called pentamidine), and he gradually recovered. During the hospitalization, Ishmael was found to be anemic and to have a low white blood cell count. Although he insisted that he had been eating well, he was sufficiently malnourished that the protein level in his blood was decreased. On being weighed, he was surprised to find that he had lost 4 of his accustomed 140 pounds. The worst news he was given, however, was something he was not yet able to understand: The marker cell of HIV infection, the T4, or CD4, lymphocyte was found to be at a level of 120 per cubic millimeter of blood, very far below normal.
Pneumocystis carinii
. Ishmael was admitted to the hospital and the doctors passed a snakelike viewing device called a bronchoscope down into the depths of his windpipe, from where a small sample was taken for culture and the microscopic study that revealed the tightly packed globular structures of
Pneumocystis
. He was given antifungal medication for the thrush and started on a course of a highly specific antibiotic for the pneumonia (called pentamidine), and he gradually recovered. During the hospitalization, Ishmael was found to be anemic and to have a low white blood cell count. Although he insisted that he had been eating well, he was sufficiently malnourished that the protein level in his blood was decreased. On being weighed, he was surprised to find that he had lost 4 of his accustomed 140 pounds. The worst news he was given, however, was something he was not yet able to understand: The marker cell of HIV infection, the T4, or CD4, lymphocyte was found to be at a level of 120 per cubic millimeter of blood, very far below normal.
It is not known whether Ishmael complied with discharge instructions to take his prescribed medications, whose function was to prevent further episodes of the lung infection he had by then learned to call PCP,
Pneumocystis carinii
pneumonia. Most likely he did not, because he returned eleven months later, in January 1992, with similar but even worse symptoms. This time, he complained in addition of severe headache and nausea and seemed somewhat confused. An evaluation of his spinal fluid demonstrated the presence of meningitis caused by a yeastlike organism called
Cryptococcus neoformans
. He was also found to have a bacterial infection of the right ear, but he was too mentally befuddled to be aware of it. His CD4 count was down to 50—HIV’s destruction of the immune system was progressing rapidly. Although Ishmael almost succumbed to the combination of three separate forms of infection, skillful management by the Yale–New Haven AIDS team got him through. After three weeks in the hospital, he was able to go back to Carmen and the girls, having amassed a bill of some twelve thousand dollars. Because he had long since lost his health insurance after being fired from his factory job as the result of the drug habit, the costs were assumed by the state of Connecticut.
Pneumocystis carinii
pneumonia. Most likely he did not, because he returned eleven months later, in January 1992, with similar but even worse symptoms. This time, he complained in addition of severe headache and nausea and seemed somewhat confused. An evaluation of his spinal fluid demonstrated the presence of meningitis caused by a yeastlike organism called
Cryptococcus neoformans
. He was also found to have a bacterial infection of the right ear, but he was too mentally befuddled to be aware of it. His CD4 count was down to 50—HIV’s destruction of the immune system was progressing rapidly. Although Ishmael almost succumbed to the combination of three separate forms of infection, skillful management by the Yale–New Haven AIDS team got him through. After three weeks in the hospital, he was able to go back to Carmen and the girls, having amassed a bill of some twelve thousand dollars. Because he had long since lost his health insurance after being fired from his factory job as the result of the drug habit, the costs were assumed by the state of Connecticut.
In early July of 1992, Ishmael, who by that time was scrupulously keeping his appointments at the clinic, developed a large painful abscess in his left armpit, requiring surgical drainage. It was on this visit that he first met Mary Defoe. Over the next few weeks, she supervised his outpatient treatment for sinusitis and another ear infection, while the abscess healed as well.
As Ishmael was recovering from his bacterial illnesses, he once again noted that he was often light-headed and dizzy and sometimes had trouble maintaining his balance. Shortly after the onset of these disturbing symptoms, his memory began increasingly to fail him. Carmen became aware that he did not always comprehend even simple sentences. The symptoms progressed over the next month, to the point where he was confused and lethargic most of the time. In spite of Carmen’s gratitude to the physicians, she gave in to his entreaties not to be taken to the emergency room. Both she and Ishmael were afraid of what another hospitalization might mean. He was now losing weight more rapidly, and they knew that, once admitted, he might never come home.
Carmen finally called an ambulance when she awoke one morning and found her husband too far gone to resist. By then, Ishmael was almost in coma, his left arm was twitching uncontrollably, and he barely responded to commands shouted into his ear. From time to time, his entire left side would go into a brief convulsion. A CT scan showed findings most consistent with the type of brain infection caused by a protozoan called
Toxoplasma gondii
, although the blood tests did not confirm that diagnosis. The pictures were striking and consisted of multiple small masses on both sides of the brain. Similar lesions are often found in AIDS patients who have a malignancy called lymphoma, but Ishmael’s looked more like those of toxoplasmosis.
Toxoplasma gondii
, although the blood tests did not confirm that diagnosis. The pictures were striking and consisted of multiple small masses on both sides of the brain. Similar lesions are often found in AIDS patients who have a malignancy called lymphoma, but Ishmael’s looked more like those of toxoplasmosis.
At this point, the medical staff decided that even though the diagnosis was not firmly established, it would be safest to begin treatment for
Toxoplasma
, in view of its greater frequency than lymphoma in AIDS patients. When only slight improvement could be discerned after two weeks of drug therapy, Ishmael was taken to the operating room, where the neurosurgeons drilled a small hole in his skull and took a tiny bit of brain for biopsy. Microscopic study of the tissue did not identify the protozoa in the brain, but it did show changes the pathologist believed to be caused by healing of the
Toxoplasma-
induced disease. This encouraged the AIDS team to continue their treatment even in the face of residual uncertainty about the diagnosis. Within a week, however, it became clear that Ishmael’s condition was worsening. Because no definite
Toxoplasma
had been identified, those members of the team who had argued against that diagnosis now recommended radiation therapy for a presumed lymphoma of the brain. Before the advent of HIV, brain lymphoma was exceedingly rare, but it is now seen with frequency in AIDS patients.
Toxoplasma
, in view of its greater frequency than lymphoma in AIDS patients. When only slight improvement could be discerned after two weeks of drug therapy, Ishmael was taken to the operating room, where the neurosurgeons drilled a small hole in his skull and took a tiny bit of brain for biopsy. Microscopic study of the tissue did not identify the protozoa in the brain, but it did show changes the pathologist believed to be caused by healing of the
Toxoplasma-
induced disease. This encouraged the AIDS team to continue their treatment even in the face of residual uncertainty about the diagnosis. Within a week, however, it became clear that Ishmael’s condition was worsening. Because no definite
Toxoplasma
had been identified, those members of the team who had argued against that diagnosis now recommended radiation therapy for a presumed lymphoma of the brain. Before the advent of HIV, brain lymphoma was exceedingly rare, but it is now seen with frequency in AIDS patients.
At first, Ishmael responded to the X-ray treatments by a partial awakening from what had become a profound coma. He even reached the point where he was able to swallow small amounts of custard and pureed foods spooned into his mouth by a nurse or Carmen. But the gains were short-lived. The coma returned, his low-grade fever rose to levels of 102°–103° each day, and he developed a bacterial pneumonia in addition to some other generalized infection whose nature was obscure and, in any case, resistant to treatment. This is how things stood on that November noon when Mary Defoe and I stood at Ishmael’s bedside.
Although he was deeply unconscious, Ishmael’s face was troubled. Perhaps there was some flickering comprehension of his struggles to move air in and out of those infected lungs, or of the decreasing amounts of oxygen being carried to his gasping tissues. He had become septic, and the entire mechanism of his life was failing. Or maybe his troubled expression had nothing to do with the physical distress of breathless tissues. Possibly, something within him was trying to communicate that he was too exhausted to continue—that he was trying to die but couldn’t. And yet, is it really possible that he longed for death? Would not any struggle be worth the anguish, for the chance to see his girls one more time? No one knows why the faces of dying men and women look the way they do—an appearance of discomfort may be as meaningless as an appearance of serenity.
Ishmael’s travail ended the next morning. Carmen, feeling the closeness of death, had taken the day off from her job in a New Haven cardboard box factory and sat at his bedside as the seconds grew slowly longer between his respirations, until they stopped altogether. Without being approached again, she had told Mary the night before that there was to be no resuscitation—she could see that her promise to her husband had been kept; everything possible had been done. When Ishmael stopped breathing, she simply stepped outside to inform the nurse who had been sitting with her most of the morning. And then, Carmen did something she had refused over and over again while Ishmael was still alive—she asked to be tested for HIV.
In my section of the United States, the Northeast, AIDS has become the leading killer of men between twenty-five and forty-four—this in a region where deaths among this age group from street violence, drug addiction, and gang warfare are as familiar a part of the urban environment as the poverty and hopelessness that breed them. How can one begin to make sense out of this affliction? No wisdom has yet been discovered, no lesson revealed. AIDS as metaphor, AIDS as allegory, AIDS as symbolism, AIDS as jeremiad, AIDS as a test of mankind’s humanity, AIDS as an epitome of universal suffering—it is these kinds of lucubrations that consume the intellectual energies of moralists and littérateurs nowadays, as though something good must at any cost be salvaged from this foul scourge. But even history fails us; analogies with past plagues are always found wanting.
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