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Being Alive

The Big Uneasy: Living in the Protease Age


Being Alive 1997 Nov 5: 2

A little more than a year into the age of protease inhibitors, many of us are enjoying a quality and length of life literally unimaginable not very long ago. Many of us who were alarmingly sick-dependent on intravenous drugs to forestall devastating illness, undergoing chemotherapy, experiencing debilitating wasting-are now living relatively healthy, even "normal" lives, thanks to these new drugs.

Even still, disturbing blips are starting to appear on the radar screen. A San Francisco study reports that protease inhibitor combination therapy failed more than 50% of the study participants. David Ho's optimistic theory that virus eradication might be possible within three years now looks like a major miscalculation: a recent study suggests that the virus can linger in "reservoirs" for as much as 10 years or more. We hear of people whose viral loads are starting once again to break through the "undetectable" barrier. Some people we know are growing weaker, getting sick again, with death looking more and more like a distinct possibility.

It used to be common to refer to living with AIDS as "being on a roller coaster." All the ups and downs, the twists and turns. You'd get sick, you'd get better, then worse, then worse still, then better, on and on. But there was one constant in all this movement, and that was the probability, perhaps even the certainty, that death would be waiting for us at the end of the ride. This "constant," ironic as it might seem, provided a steadying influence on the ride, like the unmoving steel tracks under the racing roller coaster. The probability of death is what we involuntarily raced along on, and yet also what gave the journey substance, value, sometimes even excitement, and an odd form of stability.

For many of us, especially those of us who had progressed to actual illness, the specter of our own imminent death became the organizing principle of our life: adrift in a sea of calamitous illness, we anchored ourselves to the only sure thing we knew, and believe me, it wasn't taxes. Death became our certainty, the center around which to compose (and process) our fear and hope and pain. And this gave our daily life an astounding kind of freedom, sometimes experienced as simple delight in the way the morning sun caught the mountainside, sometimes as a delirious ride down to a Strangelovian Armageddon on a nuclear warhead. We learned to abandon hope, in order to live with abandon.

Some of us looked all of this straight in the eye, others looked at it askance, still others looked not at all. Yet everyone knew, whether they could acknowledge it or not, that their bodies were waging an internal war with a virus, and that the virus always, eventually, won.

Now, as if in the blink of an eye, it is all different. Certain death has been replaced by a deeply troubling anxiety about living. We're not on a roller coaster, we're carless on a friggin' transcontinental highway trying to hitch a ride to god knows where and we can't even remember where we came from or why we're traveling this road in the first place or where we think we're going. Happy, certainly, to be alive, and yet oddly displaced, out of sync with the culture, and carrying a backpack with a big empty space where hope used to be. We long to resuscitate hope, and yet don't really know how to do so.

Hope bridges one's heart and soul to the future; it's a way of imagining with optimism a later day. How can one honestly do that, when the future is so precariously uncertain, when the present good fortune rests upon such a shaky foundation? Will these drugs fail me? Will I get sick again? Will this horrendous disease flare up once more and devour me? We can settle these anxieties temporarily and get on with things, but we know, profoundly, that we are once again living without a sure center, and must somehow set about finding a new organizing principle if we wish to continue on our way, strangers in an even stranger land, struggling to find, once again, a steady way into the coming days.

------------------------------------------------------------- The Big Uneasy will be a recurring feature of the Newsletter. Anyone wishing to share his tale of life in the Protease Age is encouraged to write to us. Email: Surface mail: Chris Griffin, c/o Being Alive, 3626 Sunset Blvd., LA, CA 90026.


Information in this article was accurate in November 5, 1997. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.