With the advent of a new miracle drug, thousands are getting a reprieve from AIDS. Now what?
His prognosis floored me. Although I'd never been sick a day from this virus, I'd been HIV-positive for 15 years and assumed that sooner or later, my number would be up. In fact, the number of my T-cells had recently slipped into the danger zone and sent me into a panic. Rather than sounding the death knell, however, Bellman was telling me that the dark ages of AIDS were over, a whole new paradigm of treatment and underestanding emerging. I'd living to see the day so many less fortunate had only dreamed of--the day when AIDS was being reclassified from a fatal disease to a manageable illness. It was time to reclaim the future, and turn our thoughts fromchecking out to planning for an indefinite future.
The reason for Bellman's optimism--echoed by the scientific community at the World AIDS Conference in Vancouver last July--centers on a new family of drugs called protease inhibitors, the first of which was approved by the FDA in December 1995. Estimated to be 1,000 times more effective than drugs such as AZT (especially used in combination with them), protease inhibitors represent the first major breakthrough in AIDS treatment since the epidemic began. Although they don't rid the body of HIV, protease inhibitors block its ability to reproduce, giving the patient's immune system a chance to restore itself--even when the immune system is seriously damaged.
This good news was thrilling, but puzzling too, inviting a whole new line of inquiry. There was even, you might say, a kind of loss. HIV had, after all, affected every major life choice I'd made for over a decade. In 1986, the year my first lover died, I quit my glitzy publishing job and left New York to study with a spiritual master. I began to understand the upside of having a death sentence: the rush of danger that snaps you awake, makes life urgent, pushes you to travel harder, faster, deeper, wider while there's still time. Despite the terror of living with HIV--because of it, really--my life had become more focused, more creative, and more authentic than ever before. Though it sounds strange, in many critical ways HIV actually saved my life.
But now that I was being given a reprieve, I wondered how to downshift to a 'normal' life after racing so long in overdrive. How to reinvent myself now that I wasn't at death's door. How to readjust to life as an ordinary person rather than as an AIDS martyr witing to happen. I'm not alone. This sudden reversal of fortune is creating both havoc and happiness in the AIDS community. With the door thrown open on the future, many people are feeling perplexed, like Rilke's poetical prisoner snatched from his closed cell and taken to a mountaintop, reels, unsure about how to proceed.
Robert Levithan, a New York City psychotherapist who was hospitalized with pneumocystis carinii pneumonia (PCP) in 1994, has coined the phrase post-AIDS stress syndrome (PASS) to describe the phenomenon of long-term survivors 'outliving themselves.' 'Dying lets you off the hook,' Levithan, 44, explains. 'When you think you're dying, you don't have to take responsibility for long-term goals or planning.' Just as war veterans frequently return from action traumatized and unprepared for the new set of challenges awaiting them, many of Levithan's clients have been surprised by the fallout from their own improving health. Since becoming ill, many had severed their professional ties and exhausted their bank accounts. Now, feeling physically better than they have in years, they're overwhelmed by the prospect of starting over.
What's more, many have discovered that terminal illness, however terrible, has its rewards. 'For the first time in my life, I could just let everything go and ask for help,' says Levithan, a strapping man with cobalt eyes who had always prided himself on self-sufficiency. We are seated in his stylish Manhattan apartment, surrounded by portraits of him taken by photographers such as Peter Hujar and Robert Mapplethorpe. Like many others, Levithan found that being sick freed him to do exactly as he pleased, perhaps for the first time. 'I saw that I'd been banking on a future that might not be there, so I couldn't waste the present. Guilt seemed completely absurd.'
Through the worst of it, however, Levithan never gave up the possibility that the AIDS crisis could turn around. 'Sometimes I thought I was deluded,' he admits, remembering his sudden, scary decline. 'Here I was in this old man's body, barely able to walk a few steps without sitting down. But I had this irrational faith that help might be coming.' As if to back up his magical thinking, he continued to put money in a retirement account every month. Two weeks out of the hospital, he wrote a short story called 'The Song of the Unlikely Survivor,' in which an old hermit remembers surviving a plague. 'Even then I realized that that wise old man in the woods could still be me.'
Today, that scenario seems more likely than ever. Levithan began taking Crixivan, a protease inhibitor, in October 1995 and has seen his T-cell count rise from 20 to nearly 300--an improvement that would have been unimaginable a year ago. Still, this answered prayer has its flip side. 'At first, when my T-cells went up, I was ecstatic,' he explains. 'Then I got scared because now I have more to lose. I've survived the experience of almost dying, then come back as healthy as before. But sometimes I wonder if I have the strength to go through that loss again.' Moreover, says Levithan, the loss cuts both ways: 'Even when things change for the better, there's a sense of loss. As much as I wanted to recover, part of me got attached to an image of myself as fragile and needy. I was afraid of losing the support I'd gotten by being sick.'
For some, the assumption that the AIDS epidemic is finally under control seems absurd--even as their health improves. 'This whole thing about `post-AIDS' enrages me!' says Eric Rhein over the noise of the fan whirring in his Manhattan studio. Rhein, 34, looks like a Diaghilev faerie, with cranberry lips, limpid eyes, and tiny ears that curve toward the crown of his head like a faun's. 'It's extremely naive. There's so much that still needs to be done--it's irresponsible to project anything different. When I started getting better, one of my best friends said, `Well, I guess it's over.' I said, `No, it is definitely not.' I've seen lots of people get sick, get better, and then die.'
Mark Matousek is the author of Sex Death Enlightenment (Riverhead, 1996).