The first time I walked into Dr. Paul Bellman’s office, he said ‘I
want you to know that you can survive this thing.’ He looked
like Vincent Van Gogh if the painter had gone to a yeshiva: pale
skin, red beard, soulful eyes. Unlike his double, however, he
didn’t appear to be crazy.
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).
