Her Turn to Fight la SIDA
It is a perverse reaction, but one I notice that I have more and more frequently these days. After all, it should not still be happening in the first place, not here in the United States, and most definitely not in Boston, where we have more HIV research labs and epidemiologists per square inch than probably anyplace else in the world. Yet here she is, with her squirming, beet-faced toddler on her lap, 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 cellphone 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. The young woman, whom I will call by her first initial, Y, is HIV positive, and I find myself asking not what to do next, nor which 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, is the brief but fierce scolding she gives her tiny daughter, who finally quiets down. When she returns her flat gaze to me, entirely patient, I realize what seems terrible to me is not all that earth-shattering to her.
For Y, how she will pay her rent or maybe when her boyfriend will be paroled are her most pressing concerns. Besides, she has dealt with HIV and AIDS before, having nursed her own mother, who nearly died of the disease’s complications before “the cocktails” became available. She was also my patient until she moved to Miami to escape the stress of dealing with her kids’ unwanted pregnancies and drug use as they grew older. All either of us knows about her father is that he was a womanizer who died of AIDS back on a Caribbean island. Y’s mother used to say that the only thing her husband 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. Y’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 Walgreens, using an unloaded gun. I do not know whether he continues his treatment regimen in jail; his last visit to the clinic was more than a year ago. She could never insist that he wear condoms; to do so would be an insult to his machismo, and worse, an admission -- in his eyes -- of sexual infidelity. Y looks at me now a little forlornly, like 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 U.S. Latinas. What to my eye is an alarming example of the deficiency of HIV prevention efforts, to Y is 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 whom she dreamed she could take care of (as she once did her own 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 Y’s community an inevitable part of the immigrant’s gamble: leaving the stronger social supports of home for what they imagine will be a materially better life in the U.S., which only a few lucky ones will attain. The rest are forced to make choices between unsafe sex and getting high to 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 replicating in her blood, to Y’s daughter is countless hours alone in her room because mami feels too nauseated to read or to play with her -- in turn leaving her 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 shame to ask for a letter 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. 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 no government-sponsored health education program could 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 she might become a physician herself, her firsthand education in the suffering caused by AIDS far more compelling and indelible -- not to mention practically useful -- than the facts and figures she might encounter in any textbook or lecture hall.
A pang of deep regret seizes me as I realize that 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.
This article originally appeared in the March 4, 2004, issue of the New England Journal of Medicine, copyright 2004, Massachusetts Medical Society.
