Not Everyone Dies of AIDS

Michael Callen’s story of survival
by Michael Callen

A slightly different version of what follows appeared in the Village Voice in 1988. The article was the basis for Mike’s book Surviving AIDS.

“Max just asked if you were dead yet.”

Max is the precocious 6 year old son of the piano player in my lover’s jazz band. Max hadn’t seen me in several months, and so it must have seemed a logical question.

My lover laughed nervously, not knowing what to make of the expression on my face when he told me. I was momentarily paralyzed by the insight that here in America, the one essential fact about AIDS–a notion so simple as to be accessible to a 6 year old–is that everyone who gets it dies.

I did a quick reality check: I have AIDS, but as far as I could tell, I was not dead.

I resolved then to write about the best kept secret of the AIDS epidemic: not everyone dies from AIDS. Many of us are alive and well and living in New York. And San Francisco and Los Angeles and everywhere where AIDS has reared its ugly head. The uncritical repetition of the myth that everyone with AIDS dies denies the reality of–but perhaps more important, the possibility of–our survival.

* * *

I remember in 1982 and 1983 asking several researchers whether they thought AIDS would prove to be 100% fatal. Some said yes, others said probably not–that there are very few infectious agents with a mortality of 100% for the simple reason that from an evolutionary standpoint, any disease which kills all hosts won’t itself survive very long. I learned that the survival rates for the various types of cancer are generally based on observing those cancers for at least 5 years. Since AIDS was new–or at least newly observed–no one seemed willing to hazard mortality projections.

In the early years of AIDS, it seemed that everyone did die. (For example, according to City statistics, no one diagnosed during the entire year of 1983 has survived.) But by last year, the odds of surviving had improved dramatically. According to the most recent issue of John James’ invaluable AIDS Treatment News: “For the first five years, median survival was unchanged, about ten months. But in 1986, it unexpectedly jumped to about 14 months. This improved survival resulted from better outlook for persons diagnosed with pneumocystis. Survival for KS did not improve last year, but it has always been much better.” Today, doctors recognize opportunistic complications earlier and have a better handle on treatment. Almost no one dies from their first bout of pneumocystis pneumonia these days. And I suspect that the mortality rate in the early days was higher than it might have been because so many people died from complications of the treatments. (It never made much sense to me that someone who had developed cancer because he was immunosuppressed would be treated with violently immunosuppressive chemotherapy. Often, you cured the cancer but killed the patient, who died of PCP as a complication of having no white blood cells left.)

It must have seemed to doctors that everyone who got AIDS died. They watched as patient after patient expired despite their best ministrations. And this sense of 100% mortality must have been picked up by a press too lazy to seek out evidence to the contrary.

Mostly the press got it’s information from “experts” in medical centers who probably had an exaggerated sense of the mortality rate because only the sickest patients would be referred to them. As Dr. Nathaniel Pier, a New York physician with a large AIDS practice, says in a recent issue of AIDS Treatment News: “There’s a serious bias in the medical literature as to what’s being reported, and it’s giving people a distorted picture of what is going on with AIDS. They’re not seeing the people who are doing well, the people who are surviving long, the people who have good quality of life, because those people don’t go to medical centers and therefore they don’t get papers written about them.” So, despite the distorted picture of AIDS passed on to journalists by researchers, the reality was that everyone was not dying from AIDS. It especially became clear over time that people whose only opportunistic infection with Kaposi’s sarcoma were often able to lead quite normal lives and were surviving significantly longer than other people with AIDS. But for whatever reason, these seeds of hope never gestated in the public consciousness.

As bad as the media has been in its coverage of AIDS, it can’t bear full blame for disseminating the myth of 100% mortality. Ultimately the researchers and public health officials must bear some responsibilities. Now that published reports prove that we long term survivors officially exist, it’s almost amusing to watch those who knew or ought to have known we existed race to excuse that silence.

A recent Times article quoted NYC Health Commissioner Stephen Joseph as saying that the “proportion of patients surviving five years was greater than I would have intuitively expected it to be.” What the hell does that mean? In New York City, 15% of us have survived five or more years. Shouldn’t the City’s own Health Commissioner have know that? And is it enough for him and others now to say “Oops! Guess we were wrong about 100% mortality”? Is there no one to hold accountable for the lie and its harmful effect on PWAs?

The same Times article quotes Dr. Michael Greico of St. Luke’s-Roosevelt Hospital as being surprised by the 15% 5-year survival rate “mainly because ‘people talk about AIDS as a rapidly fatal disease.'” People? What people? No, the media doesn’t deserve all the blame. It is physicians and researchers who must have been feeding falsehoods to gullible journalists.

* * *

Well, more than five years have passed since AIDS was first described and right on cue come studies on the phenomenon of long term survival. The first widely publicized statistical report came last October, from an ongoing CDC study of long term survivors directed by Dr. Ann Hardy. This study found a depressing 2-5% survival rate after three years. Then, a CDC study by a Dr. Richard Rothenberg was published in the New England Journal of Medicine. This study found that 15% of PWAs survived five or more years after diagnosis. (The survival rates varied by risk group, from a range of 6 months for female IV drug users, most of whom were black and Hispanic, to more than 5 years for white gay men, most of whom have Kaposi’s sarcoma as their sole opportunistic infection.)

Well, which is it? Two percent or fifteen percent? How could two CDC researchers have come up with such drastically different survival rates?

Pursuing an answer to this troubling question, I realized that before it is possible to agree on the number of long term survivors (much less on what contributes to survival), one had to define precisely what one meant by “AIDS.” A telephone interview with Dr. Hardy revealed startling assumptions about who counts as a long term survivor and who doesn’t. Dr. Hardy explained that blood tests on a 20-person subset of survivors revealed that a whopping one third were negative for HIV. Rather than consider what it might mean that the so-called AIDS virus could not be found in some individuals who’d had pneumocystis or Kaposi’s sarcoma or cryptococcal meningitis–all diseases which qualify one for an official diagnosis–the decision was made to discount them as genuine long-term survivors of AIDS. As Dr. Hardy explained, “They met the case definition for AIDS, but really did not have AIDS.”

I tried to imagine the CDC contacting these long term survivors to tell them they hadn’t really survived AIDS. And what would it feel like to have suffered the stigma and endless propaganda about AIDS, to have struggled with every ounce of energy to beat the odds, to have given blood to countless researchers, only to be informed that your survival doesn’t count?

There is a tautology built into the CDC’s definition of AIDS. When most people use the word, they generally mean the terminal stage of a spectrum of illness. If you’re only going to count AIDS cases that are terminal, then by definition the mortality rate is going to be 100%. Death from AIDS will become a self-fulfilling prophecy, and if you’re not dead within three years, maybe you never reallyhad AIDS in the first place.

My own case illustrates some of the problems inherent in the definition of AIDS. I was diagnosed with AIDS in 1982 as a result of a parasitic intestinal infection, cryptosporidium. I was the first case of “crypto” (as it’s called in PWA slang) my hospital doctor had seen. At the time, crypto was not thought to infect humans; it was a disease of livestock. It was–and remains–on the list of infections which qualify one for a diagnosis of AIDS. Subsequently, it has been discovered that crypto is more common in humans than had been thought. Consequently, some doctors feel that crypto ought to be removed from the list of qualifying infections. Others argue strenuously that crypto in an immunocompromised patient can and frequently does kill, and that therefore it should remain on the list. So doctors now say that in order to qualify for AIDS, the particular case of crypto must produce a certain number of stools of a certain liquid consistency over a specific period of time. (I like to imagine some CDC mole measuring stool consistency to separate the men from the boys, so to speak.) By these standards, my own case still qualifies as frank AIDS. And yet a whispering campaign continues to follow me: are you now or have you ever been.

The uncertainty about my own “right” to claim that I have AIDS–and that I’m a long-term survivor–has caused me a great deal of pain. When I’m “good,” when I tow the party line and talk about my feelings, no one questions my right to represent myself as a PWA. But when I’m “bad,” when I insist on talking about science or politics, some of my critics claim that I have no right to speak as a PWA. Frankly, I can’t fathom why anyone would pretend to have AIDS. There are easier ways to be photographed with Liz Taylor.

One doctor, in an interesting blend of epidemiology and astrology, proposed a new category for me; he suggested that I am on the “cusp” between AIDS and ARC.

All this splitting of hairs is ultimately pointless. But it is interesting to examine the underlying message of those who challenge my right to count myself as a survivor. If I had died from crypto in the summer of ’82, no one would have questioned my diagnosis. It is the fact that I refused to die that makes me suspect.

Meanwhile, AIDS-Related Complex, thought to be a “lesser” form of the disease, has killed at least 1,000 people. Consider my friend Larry. He’s sicker than many PWAs I know and certainly sicker than most PWAs whose only opportunistic infection is Kaposi’s sarcoma. Larry is a bisexual, former IV-drug using man who has had several types of skin cancer, who was hospitalized with pneumonia which proved not to be PCP, who is suffering neurological symptoms of unknown causation, who for the past seven years has endured fevers, night sweats and fatigue and whose blood tests are as bad as most PWAs. But since he hasn’t had any of the 26 or so opportunistic infections which would qualify him for an official diagnosis, does he count as a long term survivor of AIDS?

And if you can die from ARC as well as AIDS, how useful is the distinction?

* * *

What has it meant that hope has been so long denied? I suspect that it has had murderous consequences on two levels. If there’s a biologically definable will to live, it probably requires hope to sustain itself. The media’s obsession with death and dying may have suffocated the spirits of countless people with AIDS.

Max Navarre, a gay man with AIDS who is just shy of my arbitrary three year cut off, articulated the bitterness of many PWAs in an essay which will appear in the April issue of October magazine: “In the media, everyone’s a victim: of fire, of cancer, of mugging, of rape, of AIDS. In the world of reportage, no one is doing well. Victims sell newspapers. Does anyone consider the impact of this cult of the victim? Does anyone realize the power of the message ‘You are helpless. There is no hope for you?'”

“I’m not immune to the reinforcement of hopelessness that surrounds me. That reinforcement causes despair, and I believe that despair kills people with AIDS as much as any of AIDS’ physical manifestations. If we could truly believe in the possibility of living with AIDS, I think that survival figures would be higher.”

Those of us who have survived AIDS for more than three years did so against unknown odds and a conspiracy to deny the possibility of survival. Many survivors simply chose to ignore media reports. Some simply never asked their doctors what the prognosis was. Many clung to the knowledge of others who had survived longer than they. Will we ever be able to measure the damage done by the media’s refusal to seek out long-term survivors? How many PWAs have obediently fulfilled the gloom and doom prophecy? And how many physicians have simply given up on AIDS patients because they assume, consciously or otherwise, that there’s no point to aggressively diagnosing and treating complications?

“There is absolutely no question that proper patient management can contribute significantly to patient survival,” says Dr. Joseph Sonnabend. “And there’s been an assumption on the part of the doctors at medical centers, who really are removed from the day to day realities of AIDS, that there’s nothing you can do. This is a terrible assumption which has cost lives. Of course, there are those who might say `So what? If you’re adding a few months or adding a year, what does it matter?’ But I think it’s very important that doctors not lose the sense of what we’re doing, which is to maintain life and try to work out a cure to this disease.”

Those of us who’ve insisted on the possibility of surviving AIDS have been patronized, handed Kubler-Ross, sent into therapy, or faced the charge of AIDS dementia. Those caring for us could humor our illusions and ration out their emotional strength, certain that, however draining, however horrible it is to watch the progress of AIDS, the end was inevitable. Admitting the possibility of survival will mean that people around us suffer the disappointment of our hopes along with us in a new way. If death from AIDS is not inevitable, than each death is uniquely painful. And each struggle to survive is uniquely empowering.

* * *

Let the academics haggle with Talmudic exactitude over what they choose to call AIDS. People with PCP and KS and a whole list of other life-threatening infections are dying and others are surviving. And when you’re battling immune deficiency, it doesn’t much matter what you call it. Answering the question of why some of us have survived life-threatening conditions despite dire predictions is more important. There is the general sense among AIDS researchers as well as the lay population that we long term survivors may hold an important key to beating AIDS. Is it attitude? Is it something in our blood? Like many researchers, the CDC’s Dr. Hardy believes it crucial to study long-term survivors: “The answer’s there. It’s just a matter of finding it.”

* * *

George Solomon, M.D. and his colleagues at the University of California (San Francisco) sketched a tentative profile of the long-term survivor of AIDS in a recent issue of The Annals of the New York Academy of Sciences. (A more detailed study is scheduled for publication within the next few months.) Dr. Solomon suggests that long term survivors:

  1. Accept the reality of an AIDS diagnosis and refuse to believe that AIDS is necessarily an automatic death sentence;
  2. Refuse to be helpless or hopeless;
  3. Make lifestyle adjustments;
  4. Actively participate in a healing partnership with their health care providers and take responsibility for their own healing;
  5. Share a powerful belief that life is worth living;
  6. Often have a previous history of overcoming obstacles;
  7. Value exercise and general fitness;
  8. Find value in peer support groups and in helping others;
  9. Are assertive and able to say “no;”
  10. Are self-concerned and self-involved without being selfish;
  11. Are sensitive to the signals their body gives; and
  12. Are expressive and good communicators.

*     *     *

As far as I can tell, I know more long term AIDS survivors than anyone in the world. A notice I placed in the PWA Coalition Newsline last Fall, seeking long term survivors, has produced dozens of replies. Despite a persistant feeling that to talk about surviving was to jinx it, the prospect of meeting someone else who’d beat the odds overcame all reluctance. If I had to describe in one word the common characteristic of the PWAs I interviewed, it would be grit. These people were all fighters: opinionated, incredibly knowledgeable about AIDS, stubborn, and passionately committed to living, these men and women worked hard to stay alive. And they were all involved in the politics of AIDS–some by becoming publicly identified, others by and counseling and operating hotlines. Politics can be an antidote to the self-obsession that comes with AIDS. To realize that there’s someone worse off than you, whom you can help, is an incredible relief–and maybe even healing.

In the course of two dozen interviews, I discovered patterns, but no one pattern. Some had returned to the busom of their families, others were as obstinately alienated as ever. Some had noble, caring lovers, others were single (but considered themselves eligable). Some were proud of working full time and proud of it, others were working full time at disability. Some had sworn off drinking, smoking, and recreational drugging–but not all. One of the longest surviving PWAs gleefully recounted doing and dealing cocaine from his hospital bed (while undergoing experimental treatment from an IV-unit attached to his arm).

Some survivors insisted that they owe their lives to experimental therapies, while others attributed their survival to the fact that they had refused to be guinea pigs. Despite intense pressure among physicians to take AZT–the only federally approved treatment for AIDS–only one of the gay long term survivors was on AZT at the time of these interviews. When I asked why they hadn’t hopped on the AZT bandwagon, most echoed PWA Bruce Zachar’s quip: “If it ain’t broke, don’t fix it.” On the other hand, all the blacks and Hispanics I interviewed, are on AZT; state and federal subsidies that provide AZT for free encourage its use among the poor. If, as some of us suspect, AZT proves to have done more harm than good, we will have another example of where good intentions backfired, costing the lives of minorities.

One long term survivor of KS, “Thomas,” has completely turned his back on Western medicine in favor of macrobiotics. At 48, he practically glows with health–proof that Western medicine hasn’t cornered the market on AIDS treatments. And in fact, everyone I talked to had at least dabbled with holistic therapies.

More surprising to me than an interest in past life regression and Shirley MacLaine was a rekindling of religious sentiment. A majority of long term survivors spoke movingly about a return to the faith of their childhoods. Others spoke more generally about spiritual rebirth. I hadn’t expected to discover so much religious faith, because it certainly hasn’t played any role in my own survival. I have filed safely away a signed, notarized document indicating that any request I might make for religious assistance is to be taken as prima facie evidence of dementia sufficient to invoke my power of attorney.

My own explanation for the recrudescence of religious sentiment among long-term survivors would be this: The psychoneuroimmunologists may be right; there may well be a will to live. Marshalling this will requires hope. And when rational systems offer no hope, we turn to those systems which do. In our culture, that means religioous systems that speak of life after death, of meaning to suffering, of a caring, paternal god who will take care of you.

* * *

When asked why I think I’ve survived five and a half years after my diagnosis, I usually quip: “Luck, Classic Coke, and the love of a good man.” I’m only half joking. I have been lucky. I have never been that sick. Although my first AIDS opportunistic infection, cryptosporidiosis, nearly killed me, it didn’t. And the AIDS complications I’ve had since then have been comparatively mild: bacterial pneumonias; shingles; chronic, often violent diarrhea; blood tests which show a depletion of the T-cells which protect one from disease; and some strange immune complex problem which has required that I receive transfusions periodically.

But somehow (genetics, perhaps?) I’ve managed to avoid Kaposi’s sarcoma (KS). And I’ve been lucky enough to tolerate Bactrim (a powerful sulphur drug) which I’ve taken as prophylaxis against the number one killer of People with AIDS, pneumocystis carinii pneumonia (PCP). This too may mostly be luck, although the fact that my maverick doctor insisted on prophylaxis from the day of my diagnosis is just good doctoring.

And I am lucky enough to have been a skeptic. For example, I have never believed that HIV, or any other “new” virus, is the cause of AIDS. By the age of 27 when I was diagnosed, I had had thousands of sexual contacts and had, as a consequence, developed dozens of sexually transmitted diseases–viral, bacterial, parasitic and fungal. When I got AIDS, the question I had was not why, but rather how I had been able to remain standing for so long! Whether I’m right or wrong in my belief that AIDS is really the result of repeated assaults on the immune system by common infections, the important thing is that I always believed that if I stopped doing what I thought was making me sick, I could get better.

Believing that I could survive was probably the precondition necessary for my actual survival. Unlike many other people with AIDS who considered themselves, in playwright Larry Kramer’s phrase, merely “ticking time bombs,” my AIDS world view admitted from the first at least the possibility of recovery. My doctor’s shared skepticism about the etiological party line led him to discourage me from jumping on many a bandwagon of experimental treatments. This also probably saved my life. My macrobiotic friends cringe when I credit Classic Coke as an element of my survival. And they’re probably right. After all, as any Mom will tell you, a strip of bacon left overnight in a glass of Coke will “fry” by morning; imagine what it does to your gut. But in my survival strategy, Coke represents pampering myself–giving myself permission to enjoy.

My lover hates when I say that he’s the key to my survival because it implies that if he leaves me, I’ll die. Or that if I die, he must not have loved me enough.

I met Richard at the absolute lowest moment of my life, in fact, the week of my diagnosis. The worst part about being diagnosed wasn’t the thought of dying. It was believing that I would die without ever having known the love of another man. I’d had lots of sex; but I’d never really had a lover–as in living with and wanting to grow old and grumpy with. And so, when the AIDS sentence was pronounced, I felt like factory seconds–damaged merchandise. It never occurred to me that anyone would risk loving me now. I couldn’t believe he hung around. But he did. And we’ve been together for 5 1/2 years. I do not believe that it is mere coincidence that the length of my long term survival is the same as the length of our relationship. Though he hates it when I say it, if I’d been alone, I’m not certain that I’d still be here.

* * *

For weeks, I flailed about in search of a nice ending for this piece. Fate intervened. Last week, I was forced to swallow a tv camera (they called it an endoscope). Biopsies suggest that I either have lymphoma or may soon develop it. I’m back on the merry-go-round of inconclusive tests, disagreeing doctors and expensive hospitals.

In the first years of AIDS, I had a pretty simplistic notion of hope. I thought that if one believed hard enough in the possibility of survival–if you were a “fighter”–you could beat AIDS. Then some of the bravest and best–fighters who had believed as much as I had that they’d beat this thing–fell to AIDS. I have refined my belief: having hope won’t guarantee that you’ll survive AIDS, but not having hope seems to guarantee that you’ll succumb quickly.

Although I’m winded from five and a half years of more or less peacefully co-existing with AIDS, I must now readjust to the possibility of lymphoma. Even in dark moments, when doubt and hopelessness threaten to overwhelm, I am aware of an almost palpable will to live. The preciousness and exhilaration of living overwhelm. Those hysterical joie de vivre of Julia Child cooking videos, my cookie cutter collection, the immanent release of Streisand’s next album, and the secure sensation of my lover coming to bed, sometimes make me want to weep with joy. I should miss them so, if I died.

I’m convinced it’s as rational to have hope as it is to give up. If 85% of people diagnosed with AIDS are dead after five years, then 15% are still alive. I intend to remain among that prophetic minority.