Lazarus Gets A Third Wind
From career choices to his sex life to his stunned friends, renewed life has brought one headache after another
If patients who gained renewed health because of successful AIDS treatments indeed experienced "The Lazarus Syndrome," then our man Lazarus has been up and on his feet for a couple of years now. The euphoria of his good fortune has begun to wear off a bit, and reality has set in.
We've heard the stories of confused men and women living with AIDS, once convinced they were at death's door but suddenly having to deal with issues of income, work, retirement, paying off incredible debt, and the emotional whiplash of finding out they might live when they had prepared for the worst. As a result, "back-to-work" programs have sprung up across the country, giving many AIDS agencies a creative break from the type of programs they spent the first fifteen years of the epidemic offering. Client education programs, such as the "Reconstruction" model pioneered by the education department I direct at AID Atlanta, stepped in to help the newly healthy sort out everything from emotional confusion to explaining a five-year gap on their resumes.
Let the backlash begin. Lazarus is more confused than ever. From career choices to his sex life to his stunned friends, renewed life has brought one headache after another.
For instance, the abundance of programs that aid people with AIDS in returning to productive lives can create a dilemma for those who are physically improved but otherwise remain shell-shocked from years of living life in three-year increments. These people may feel compelled to jump on the Back-to-Work Bandwagon when they haven't thought through the ramifications carefully. "Gee," they muse, "I suppose it's time I stopped watching daytime television and got a job again." So eager may they be to "do the right thing" or return to careers that they may carelessly leave behind benefits such as Medicaid that are paying for the very drugs that make their renewed health possible. Until legislation such as the pending Jeffords-Kennedy Work Incentives Improvement Act of 1999 (expanding benefits for the disabled who return to work) becomes the law, this is potentially a disastrous choice indeed.
How sure are these would-be back-to-workers that their physical health is up to a more demanding lifestyle? PWAs on disability often sleep late, make the trek to the gym around noon, have an afternoon nap ... and feel terrific all day long. What full-time employee wouldn't love that schedule?
People living with HIV/AIDS who are considering such a change should try two exercises to test their physical resolve. First, they should keep a health journal. They should chronicle every day, listing every malady, every bout of depression or diarrhea, and the extent to which they adhere to their medications. This information should be shared with their physicians, so that visits with the doctor don't become a litany of all that has improved but are instead a realistic account of their health as compared with that of a perfectly healthy person. (Having these details in one's medical files will also deter any private disability company that may be just waiting for a single clean bill of health to force a beneficiary back to work.)
Next, our Lazarus should give a work schedule a trial by volunteering for a favorite charity for a full forty hours a week for several weeks. That means showing up at nine, not leaving until five. The journal should be scrupulously maintained to reflect any fatigue, missed days, tardiness, and, most importantly, missed doses of medications. After only a couple of weeks, many people have a much different attitude about their readiness for full-time employment. Those that keep the schedule successfully, on the other hand, tend to have more confidence about their choice.
While the possibility of returning to mainstream employment may be the most obvious and most immediate change Lazarus faces, fallout from this profound shift in the nature of AIDS has affected people just as deeply in more intimate, less tangible ways.
Consider the shift in relationships for those experiencing renewed health. Many people with AIDS are discovering that the partner they wanted to die with isn't necessarily the partner they want to live with. As one client in a Reconstruction workshop recalled, he was sitting at the breakfast table one morning with his partner. "I'm going to live another twenty years ..." he said as the realization swept over him, and then, looking across the table to his partner, he added, "... and not with you."
This is a two-way street, of course. Many HIV-negative individuals, upon entering a relationship with someone living with AIDS, did so with some very specific expectations. Even if the partner was diagnosed midrelationship, the relationship's future change dramatically. These uninfected partners anticipated, or were resigned to, a future that included nursing care, late nights, and at some point a bedside vigil. They probably planned -- consciously or not -- for the time when the partner would be gone. Faults in the relationship that otherwise might have meant a reassessment of their life together were overlooked in favor of getting through a tragic and ultimately fatal crisis. When Lazarus awoke, however, the expectations were dashed while the relationship faults slowly became amplified.
Lazarus also has a sex drive he can hardly handle. After years of "not tonight dear, I have a headache, chronic diarrhea, and a touch of impotence," renewed health has meant that motors that have been idle for ages are revving once again.
The promise of an active sex life, though, brings problems that go beyond the "Do I tell?" dilemma. Particularly among gay men, unprotected sex (don't be fooled by the faddish "barebacking" -- this phenomenon is nothing new to the AIDS equation; we're just discussing it now) presents an opportunity for Lazarus to recreate a sexuality he thought had died with his plans for the future.
Among many gay men, though, is an unwritten code of conduct that suggests that, if you are HIV positive, and I am positive, we'll be having unprotected sex. Disclosure may be easier these days, but often that is at least partly because it answers the question of what kind of sex the participants may be having. There is strong concern that people with HIV not only can infect an uninfected person (a documented fact), but also can reinfect a positive person with a more virulent or resistant strain of the virus (a fear that has yet to be solidly documented). In the absence of compelling scientific data to thwart unprotected sex among HIV-positive persons, Lazarus is torn between protecting himself theoretically and enjoying a sexual freedom he hasn't had for years (if ever).
Obviously, the choice about having safer sex isn't limited to those with renewed health; all HIV-positive people must make these choices every day. But for someone who had literally given up hope of an active sex life because of years of illness, the yearning for "old-fashioned" sex is all the more palpable. Only time, and science, will tell if unsafe choices with other positive people will lead Lazarus to a final, ironic demise.
All of these concerns are not limited to Lazarus alone. They have been deeply felt by those of us working in AIDS, and by our community at large -- particularly communities at high risk for infection.
First, it's possible that the ranks of long-time talent in the AIDS arena will be diminished again, not through massive deaths as in the 1980s, but through a self-attrition process based on our personal Lazarus syndromes. Old warhorses living with HIV like myself, having been devoted to AIDS work for fifteen years or more, firmly believed we would be in this battle until we died. Now, many of us are taking another look at that commitment. Not-for-profit work doesn't fatten our retirement funds. We're trading in our youthful, crisis-driven idealism for the harsh realities of our bank accounts or to pursue career dreams that were sidetracked by HIV.
Even long-time activists who are not HIV-infected are taking this opportunity of reduced death rates and the fall of the high drama quotient to utilize their talents elsewhere. Their replacements will enter the AIDS arena at a time when everything is colored by the developments of the last few years -- both the optimism and the apathy -- and with little historical perspective on the ebbs and flows of progress and tragedy over the years.
Finally, it is important to realize that Lazarus has had an impact on those we are trying to save from becoming infected. If we have healthy, active proof that someone can be pulled from the brink of death and that others, though infected, are avoiding illness altogether, imagine the ramifications we are facing in HIV education work. The Lazarus Syndrome begets The Prevention Crisis. It is increasingly difficult to present two disparate messages to the public: "Getting HIV is not a death sentence" versus "Don't get HIV because it could kill you."
Life -- and AIDS -- is complex. But as much as we would like our communities to understand the details, the vast majority of AIDS messages received by those we are trying to protect are embodied in sound bites on the evening news. And the sound bites of the late 1990s have been "People with AIDS are living longer." "Lazarus back from the dead." "Back to work." "Gym memberships." "Lots of pills, but the patient looks great!"
The truth, of course, is a blend of confusing public benefits, insecurity about returning to work, relationships adrift, a dangerous and unsure sexual landscape, the departure of committed advocates, and an uninformed public convinced the crisis has eased.
The only certainty that remains is how creative AIDS can be in its cruelty.
This article was provided by Body Positive. It is a part of the publication Body Positive.