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: firstname.lastname@example.org Surface mail:
Chris Griffin, c/o Being Alive, 3626 Sunset Blvd., LA, CA