Questions for an Epidemic
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《新英格兰医药杂志》
It is a perverse reaction, but one that I notice myself having more and more frequently these days. After all, it should not still be happening, not here in America, and most definitely not in Boston, where we probably have more HIV research laboratories and epidemiologists per square inch than anyplace else in the world. Yet here she is, with her squirming, beet-faced toddler on her lap, a metaphor for my unwillingness to give her the result. Behind her, a vast, bottomless, horribly red poppy in a print of the famous Georgia O'Keeffe painting threatens to inundate us, like some spreading stain of all the blood there is in the world. Her cell phone goes off, its ring a few familiar bars of "Guantanamera," an old Cuban song my abuela used to sing to me, and I am grateful for the last precious moments of respite it provides; she tells the caller, in urgently whispered Spanish, that she is here in the doctor's office, no, she can't talk now. Then, she looks up again, directly into my eyes. Yadiris, as I'll call her, is HIV-positive, and I find myself asking not what to do next, nor what antivirals I should prescribe, but "Why?" Why did this happen?
Her surprising, rather flinty composure begins to answer my question. She has lived in the cold, starkly urban Northeast too long. The only emotion she shows, perhaps betraying some flash of anger at the diagnosis, takes the form of a brief but fierce scolding that she gives her tiny daughter, who finally quiets down. When she returns her flat, patient gaze to me, I realize that what seems to me to be terrible news is not all that earth-shattering to her. In that way especially, she is like so many of us, for whom other concerns — fears of fundamentalist-inspired terrorism, anxiety about the stagnant economy, worry over the myriad shortcomings of the health care system — have eclipsed the sense of the immediacy of the AIDS epidemic. We have grown too tired to be angry anymore, too distracted to care, too removed to do anything except pose rhetorical questions.
For Yadiris, it is how she will pay her rent or maybe when her boyfriend will be paroled that is her most pressing concern. Besides, she has dealt with HIV and AIDS before, having nursed her own mother, who nearly died of complications of the disease before "the cocktails" became available; her mother was also my patient, until she moved to Miami to escape the stress of dealing with her children's unwanted pregnancies and drug use. All either of us knows of Yadiris's father is that he was a womanizer whom her mother never forgave and who died of AIDS back in Santo Domingo; her mother used to say that the only thing he ever gave her to remember him by was the infection, and that his punishment from God would be that his children would end up orphaned. Yadiris's boyfriend also has la SIDA, for which I treated him until he was incarcerated for stealing diapers, infant formula, and about $60 in cash from a drugstore, using an unloaded gun he had found under his parents' bed. I do not know whether he continues on his treatment regimen in jail; his last visit to the clinic was more than a year ago. Yadiris could never insist that he wear condoms; to do so would be an insult to his machismo, and what is worse, he would see it as an admission of sexual infidelity. Yadiris looks at me now a little forlornly; she seems to believe that it is just her turn.
The statistics, even when they do catch our attention, have a way of obscuring so much of what continues to fuel, for example, the rising infection rate among poor Latinas in the United States. What to my eye is an alarming example of the deficiency of HIV-prevention efforts is, to Yadiris, simply the next chapter in a damaged life to which she long ago resigned herself, drawn haplessly into a relationship with a man with HIV infection whom she dreamed she could take care of (as she once did her mother). What to United Nations public health experts is another person added to the approximately 42 million already living with HIV and AIDS throughout the world is, to Yadiris's community, part of the inevitable gamble of leaving the stronger social supports of home for the materially better life in the States that only a few lucky immigrants will attain, while the rest are forced to make choices among unsafe sex, getting high, and numb feelings of isolation, failure, and worthlessness. What to the Commonwealth of Massachusetts is an onerous new annual $20,000 MassHealth expenditure on the antiretroviral drugs needed to suppress the HIV that is now replicating in Yadiris's blood represents, to her daughter, the prospect of countless hours alone in her room because Mami feels too nauseated to read or to play with her — which will leave her, in turn, with an awful void of her own that she, too, will someday try to fill.
How different this young woman seems to me now. She was once the frightened yet eager-to-please teenager who frequently attended her mother's appointments, overcoming her shame to ask for a letter from me to keep the telephone or the heat from being shut off, keeping her younger brother and sister in their seats while I listened to her mother's lungs. I imagined her preparing the meals her mother could not manage to cook. I imagined that seeing her mother dwindle to a mere 80 pounds would somehow shield her from contracting HIV herself, that she was learning lessons of personal responsibility and self-sufficiency that no government-sponsored health education program could possibly teach better. When I walked in during one visit to see her pretending to check her mother's reflexes with the reflex hammer I had left on my desk, I even imagined that she might become a physician herself someday, her firsthand education in the suffering caused by AIDS far more compelling and indelible (not to mention useful) than the mere facts and figures she might encounter in any textbook or lecture hall.
A pang of deep regret seizes me as I realize she will soon be taking anti-HIV medications herself, instead of prescribing them. To keep the tears from reaching my eyes, I ask her abruptly to sit up on the exam table. I palpate her cervical lymph nodes, check her oropharynx for thrush. For a moment, lost in the act of peering inside her, I forget all my questions, as if I might see in her glistening pink throat their elusive answers, her voice somehow made visible, powerful, eloquently indomitable.
I see nothing, however, and she remains utterly silent.
Source Information
(Identifying details about the patient have been changed to protect her privacy.)
From Beth Israel Deaconess Medical Center and Harvard Medical School — both in Boston.(Rafael Campo, M.D.)
Her surprising, rather flinty composure begins to answer my question. She has lived in the cold, starkly urban Northeast too long. The only emotion she shows, perhaps betraying some flash of anger at the diagnosis, takes the form of a brief but fierce scolding that she gives her tiny daughter, who finally quiets down. When she returns her flat, patient gaze to me, I realize that what seems to me to be terrible news is not all that earth-shattering to her. In that way especially, she is like so many of us, for whom other concerns — fears of fundamentalist-inspired terrorism, anxiety about the stagnant economy, worry over the myriad shortcomings of the health care system — have eclipsed the sense of the immediacy of the AIDS epidemic. We have grown too tired to be angry anymore, too distracted to care, too removed to do anything except pose rhetorical questions.
For Yadiris, it is how she will pay her rent or maybe when her boyfriend will be paroled that is her most pressing concern. Besides, she has dealt with HIV and AIDS before, having nursed her own mother, who nearly died of complications of the disease before "the cocktails" became available; her mother was also my patient, until she moved to Miami to escape the stress of dealing with her children's unwanted pregnancies and drug use. All either of us knows of Yadiris's father is that he was a womanizer whom her mother never forgave and who died of AIDS back in Santo Domingo; her mother used to say that the only thing he ever gave her to remember him by was the infection, and that his punishment from God would be that his children would end up orphaned. Yadiris's boyfriend also has la SIDA, for which I treated him until he was incarcerated for stealing diapers, infant formula, and about $60 in cash from a drugstore, using an unloaded gun he had found under his parents' bed. I do not know whether he continues on his treatment regimen in jail; his last visit to the clinic was more than a year ago. Yadiris could never insist that he wear condoms; to do so would be an insult to his machismo, and what is worse, he would see it as an admission of sexual infidelity. Yadiris looks at me now a little forlornly; she seems to believe that it is just her turn.
The statistics, even when they do catch our attention, have a way of obscuring so much of what continues to fuel, for example, the rising infection rate among poor Latinas in the United States. What to my eye is an alarming example of the deficiency of HIV-prevention efforts is, to Yadiris, simply the next chapter in a damaged life to which she long ago resigned herself, drawn haplessly into a relationship with a man with HIV infection whom she dreamed she could take care of (as she once did her mother). What to United Nations public health experts is another person added to the approximately 42 million already living with HIV and AIDS throughout the world is, to Yadiris's community, part of the inevitable gamble of leaving the stronger social supports of home for the materially better life in the States that only a few lucky immigrants will attain, while the rest are forced to make choices among unsafe sex, getting high, and numb feelings of isolation, failure, and worthlessness. What to the Commonwealth of Massachusetts is an onerous new annual $20,000 MassHealth expenditure on the antiretroviral drugs needed to suppress the HIV that is now replicating in Yadiris's blood represents, to her daughter, the prospect of countless hours alone in her room because Mami feels too nauseated to read or to play with her — which will leave her, in turn, with an awful void of her own that she, too, will someday try to fill.
How different this young woman seems to me now. She was once the frightened yet eager-to-please teenager who frequently attended her mother's appointments, overcoming her shame to ask for a letter from me to keep the telephone or the heat from being shut off, keeping her younger brother and sister in their seats while I listened to her mother's lungs. I imagined her preparing the meals her mother could not manage to cook. I imagined that seeing her mother dwindle to a mere 80 pounds would somehow shield her from contracting HIV herself, that she was learning lessons of personal responsibility and self-sufficiency that no government-sponsored health education program could possibly teach better. When I walked in during one visit to see her pretending to check her mother's reflexes with the reflex hammer I had left on my desk, I even imagined that she might become a physician herself someday, her firsthand education in the suffering caused by AIDS far more compelling and indelible (not to mention useful) than the mere facts and figures she might encounter in any textbook or lecture hall.
A pang of deep regret seizes me as I realize she will soon be taking anti-HIV medications herself, instead of prescribing them. To keep the tears from reaching my eyes, I ask her abruptly to sit up on the exam table. I palpate her cervical lymph nodes, check her oropharynx for thrush. For a moment, lost in the act of peering inside her, I forget all my questions, as if I might see in her glistening pink throat their elusive answers, her voice somehow made visible, powerful, eloquently indomitable.
I see nothing, however, and she remains utterly silent.
Source Information
(Identifying details about the patient have been changed to protect her privacy.)
From Beth Israel Deaconess Medical Center and Harvard Medical School — both in Boston.(Rafael Campo, M.D.)