Toward a New Definition of “Survivor”

There is never a "past tense" in surviving the AIDS crisis

by Hank Trout

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Photo © Saul Bromberger and Sandra Hoover Photography. All rights reserved
Photo © Saul Bromberger and Sandra Hoover Photography. All rights reserved

Like many of our fiercest advocates and activists, I have complained that we Long-Term Survivors of HIV/AIDS are almost universally neglected in our governments’ and medical policy-makers’ plans. We hear plan after plan, program after program for preventing new HIV infections, for “ending AIDS,” but only rarely and briefly do we hear any recognition of or plans to address the very real day-to-day needs of those of us who have been infected for twenty-five, thirty or more years.

The AIDS Generation is absent from AIDS policy.

How did this happen? How did the first generation of HIV/AIDS warriors, we who fought the plague and didn’t die, become invisible? There are several factors in our erasure from national policy, of course—run-of-the-mill ageism combined with the “ick factor” of homophobia (them damn old homos are still around?!) play a part. But the main reason for our invisibility is a fundamental misunderstanding of what it means to be a “survivor” of the AIDS crisis.

The word “survivor” is a past-tense word. When we talk of someone “surviving” an event, we think in terms of during and after that event. One experiences an event, and then the event is over—one has “survived” it. The incident is over and done, and the recovery can begin. In legal terms, one can be “made whole again,” restored to a condition as near as possible to before the incident.

Consider the 1989 Loma Prieta earthquake in San Francisco. The earthquake hit hard on October 17, it did its damage very quickly, it lasted for forty-five seconds and then…it was over, done. Of course, recovery isn’t instant—it takes a while to rebuild bridges and buildings and even longer to quell our fears—but rebuild and recover we did, starting on October 18. That is what earthquake survivors do.

I survived Loma Prieta in 1989. I was also diagnosed with HIV in 1989.

The difference?

There is no “recovery,” no “restoration” in surviving an HIV diagnosis. There is never a past-tense in being a survivor of the AIDS pandemic, no being “made whole again.” Surviving HIV/AIDS is an ongoing day-to-day process, not a one-time thank-goodness-I-survived-that ordeal. It is not a battle won-and-done, it is a battle joined anew every morning for the rest of our lives.

I didn’t “survive the AIDS crisis”—I continue to survive it every moment of every day.

Every day of my life, I fight back nausea and other pernicious side effects of these toxic medications; every day I cringe at the sight of the “chipmunk cheeks” deposits in my face; every night I lose sleep to the pain of arthritis exacerbated by HIV, to nightmares and night sweats; every day I contend with the poverty brought on by being unable to work full-time and living on a small fixed income in an ever-more-expensive world; every day I live in fear of some new manifestation of the virus’s potential, some new opportunistic infection, like the recent outbreak of meningitis among gay men in California; every day I battle chronic fatigue amplified by HIV; and every day, unless I carefully censor a lot of my thoughts, I risk being crushed under the unending grief and trauma unleashed by the loss of dozens of compadres.

We in the AIDS Generation work at surviving AIDS every day.

I am, of course, immeasurably grateful for the medications that have allowed me to live longer than I ever imagined. But once those life-saving medications became available to us, we in the first AIDS Generation were essentially told by the medical profession, Here! Take your pills! Now shut up and go away! We saved your life—what more do you want?! In the twenty years since the “cocktails” became available, little thought has gone into just what kind of life they saved us for.

We’ve been admonished that surviving should be enough.

No. It isn’t.

Not as long as hundreds of thousands of us face crushing poverty, unstable housing, and homelessness. Not as long as we continue to suffer the debilitating pain of neuropathy, the disfiguring effects of lipodystrophy, the degeneration of bone mass, the nausea, the chronic fatigue, all the myriad constant pains and humiliations of carrying this virus into old age. Not as long as hundreds of thousands of us remain isolated and lonely, stigmatized even by our peers. Not as long as we are ignored.

Surviving would be enough if it ever ended. It doesn’t. Our definition of “surviving” needs to acknowledge that.


Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.

  • Alex

    Living with HIV/AIDS for over 30 years I have always taken pride in being able to pay my household expenses, bills, taxes and other responsibilities on time as well as participating in local HIV planning bodies and consumer empowerment programs. Although I have stable housing, trying to maintain it becomes increasing difficult.

    I would not have been able to this without the help of ADAP and Ryan White Programs. Although this was not without considerable stress and effort because my income is at 350% of the federal poverty level (FPL), and my state’s (CT) ADAP eligibility is at 400%, yet Ryan White Parts A & B are at 300% FPL, leaving me and other consumers in a gap that is subject to the bombardment and rude harassment of medical collection agencies for medical co-pays.

    I have been plagued with osteopathic and mobility issues for many years, and at the advice of physicians delayed the replacement parts until at least the age of 60. Now that I am becoming increasing immobile, the pain unimaginable, I am being asked to justify how my osteo issues are HIV related. (I.e., and not age or other disease related )

    I suspect my viral bloom was in 1980 while in graduate school with very high fevers and strange rashes. So so my body has been fighting HIV for over 36 years. Battle worn and weary, with added elements accelerated aging I now question the logic of continuing to jump through medical hoops, take medications, and having my life revolve around medical issues.

    I think this is the wisdom in the National AIDS strategy to have unfettered access to quality health care, because if it means jumping through hoops, being harassed by medical collection agencies, and the systems that are suppose to be your supports become problematic, what point is their to bring in care?

    I guess I am proud that the number of people I have infected since my HIV positive test is zero (0) because I immediately sought medical help. It hasn’t been easy, and the answer I will give on if it “has been worth it?” varies with how I am feeling, the hassals and social isolation I am experiencing.