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If Only and Then What If
By Sue Trupin
She came down the fluorescent-lit clinic hallway right towards me. Her walk was wobbly, but her dark brown eyes reflected steady resolve. Her light brown skin looked dusky, an unsettling smoky gray. As she got closer, I saw how she made a churning motion with her tongue and lips, and when she opened her mouth, I saw the signal white patches she was so intently trying to dislodge.
"You remember me, don't you? My name is Caroline."
I did remember her, but she was barely recognizable from her robust and confident self of seven months before.
"I know I should've come in sooner," she said. "I moved to Fresno with my boy. I had to get away from all this sickness. But they don't know anything about this disease up there. They haven't got a clue....
"Nurse, I need to get those pills," she looked straight at me. "On TV that's all they're talkin' about. They've really got somethin' now, don't they? Those pills, they'd turn this all around."
Tears rolled down her bony cheeks. A scraggly red rash wove spots across her face. She was 24 years old and rail thin.
"I've got a kid," she added. "He's 5. I'm too young to be going through this."
Since all the stories in the newspaper and on TV, since all the doctors had begun pushing this new regimen of pills, patients came through the clinic with a new sense of hopefulness, desperation eclipsed by relief. Reactions varied, of course. Those who had been allowed the privilege of denial, for whom the disease had not yet become too real, moved directly to a stage of nervous smugness, as if they'd been in control all along. "I told you," one young patient boasted, "this monster can't get me."
For others -- those who'd already been tortured by a series of obscure infections but who had somehow rallied -- it was a rapturous time. God had been listening after all.
Caroline, she's too sick already, I thought. Her body is too wracked by the disease to tolerate the new medicines, the big guns. Their side effects were powerful and took time to get used to. We'd help her get the pills, of course, but it was unlikely they'd do much good.
Other patients, however, were feeling stronger within weeks after beginning the new medicines. After spiraling downward for years, in a month or two their numbers had significantly improved.
When my son, a gifted young dancer, was dying, I got my hands on these same pills, got them as early as anyone in town. It was October 1995, but for him it was too late. The new pills made his bones ache so much that even when he was lying still, his limbs would throb. He wretched and heaved, which made him bleed. He lost his appetite entirely, whereas before, he'd still been hungry enough to eat little bits throughout the day. It wasn't worth it, tormenting him further with so little time left. There was only one way out by then, and the most loving thing, our family knew, would be to let him go.
Here, a year and a half later, patients who used to be pretty far along in the disease bound down the clinic hallway with rosy, fattened cheeks, eyes twinkling and exuberant with hope. The medicines are a miracle, they tell me, and for now they are -- that is, until they aren't, and the miracle fades away.
Doctors express their fears to me. A quarter of the patients do not respond. How long will it be before resistance sets in? Though clearly dazed, the virus is a clever monster. It is only a matter of time before it gets its bearings, regroups, and pushes on. What unforeseen toll is the medicine taking, what price will patients pay for their reprieve?
Still, the statistics preclude debate. To take or not to take? Only a fool would disdain these drugs. With the earlier anti-retrovirals like AZT, the results had been vague and conflicting. Often they made patients feel sicker than they had been before, and the virus became resistant so quickly that it wasn't clear if the time they had bought was really worth the price.
"They make me feel like sh--," my son told us. "I'd just rather keep on dancing." With so little in the way of hope to offer, I could comfortably support his position.
The success of the triple-therapy regimen, however, if not altogether complete, shines forth brightly. We in the AIDS community are finally warmed by the glow of progress and gratefully bow toward the light.
A patient calls me from Hawaii and begs me to get his numbers off the computer. Giving lab results over the phone is something we rarely do. I know this guy, and he is with his family for what they all think may be their last big vacation together. He is insistent and my objections fade away.
"I know these medicines are working," he tells me, "I feel too good." The computer confirms his highest hopes. His T-cells have tripled to 148, and his viral load, which had been 80,000, is now undetectable.
"Oh, my God!" he shouts, "I can't believe it."
I hear my son's voice like an echo, his tone exactly as it would have been, hearing this same news. I hear his triumph, the vindication and the relief. Our family took that very vacation to Hawaii seven months before he died. I tell the patient on the phone how happy I am for him, but nausea is setting in and I go to the bathroom to cry and heave.
I have accustomed myself again to caring for AIDS patients. I have regained the compassionate distance that allows health and social service providers to do this work well over time. My friends had worried about me and suggested gently that I might consider changing fields. In the face of the great suffering of my patients, however, I am calm again and not confused. When their pain does remind me of my son, I quickly reassure myself. After all, he is not suffering, not now.
These new medicines, though, and patients getting well, it's a twist for which I'm not prepared. Great news, finally, but not for him.
I imagine my son as a figure in space. He is freewheeling through the universe, and the new medicines, a cluster of shiny bottles, are moving toward him according to some unmarked path. I can see how they will intersect -- the protease inhibitors and my boy -- and then again, just as clearly, I see how they might not. It can go either way. Hit or miss. The image of them brushing so closely past one another makes me feel lightheaded and clammy. It's a sort of motion sickness, like when you're in a car or a boat and the horizon won't be still.
When the work day is over, I go home sobbing as I haven't done in months. The old chorus, "What if, if only," begins its useless refrain, its litany of remorse: What if he'd been infected a year later? If only the medicines had come out a year before. I've already done this work, rewriting history, freezing frames in a pathetic effort to intercept fate. Useless.
I think once again of family and friends who have lost a kid -- suddenly in a car, in a bus falling off a cliff in India, in a single moment of violence in the street. My mind creates a hierarchy of grief. I can't help but weigh, in some silly, competitive Western way, which tragedy is worse. The others, I tell myself, didn't have the chance to say goodbye, the time to mindfully love their children to death.
Oh, but the suffering! It is that, the fun and time the monster took in dangling him over the edge, which has most tormented me. "God, Mom," he asked me more than once, "why couldn't I just have been hit by a truck?" I think of all our lost children and wonder longingly, what if they'd stayed home that day? If only they'd looked both ways.
I remember four years ago, before I knew my son was sick. Since I'd been a nurse in the adult medical clinics at San Francisco General Hospital for 10 years, my career there had exactly paralleled the epidemic and placed me squarely on the front line. I remember thinking, with a mixture of resentment and pride, how AIDS had defined my work life and that of my co-workers. The urgency of the ongoing crisis had made chronic illnesses like hypertension and diabetes insignificant in comparison. We worried about how the medical system was neglecting these other patients. But it was a war, we told ourselves. A fierce and bloody battle was being waged, and bodies lay fallen all around us. The enemy outsmarted us at every turn. I had fantasies of moving from San Francisco, of leaving the war behind. After 10 years, the relentless siege, the despair, were taking their toll.
When my son told me he was ill, I wailed bitterly against God, against the unfairness of it all. I lost what little faith I'd ever had. It seemed the virus was a devil that most certainly wanted to own me. Before the end, it indeed held me hostage and brought me to my knees.
But in time I learned to calm myself by remembering the anguish of other mothers whose children had left this world before them. I brought forth images of the peasant women who'd lost children at My Lai. I thought about mothers from earlier times who bore six children and only raised three.
As a Jew born in 1944, I drew strength from the mothers of Auschwitz and Dachau. All through this, I felt them standing by me. It occurs to me now that the arrival of the new medicines is not so unlike the liberation of the camps -- how some people died the day before the soldiers arrived, while others, unable to tolerate the food fed to them, passed on the following week.
Remembering these mothers I stay erect, imagining breathlessly what they endured.
Sue Trupin has lived in Noe Valley almost 25 years. She has been a nurse in the outpatient clinics of San Francisco General Hospital since 1982.