REMARKS OF MICHAEL CALLEN
President, People with AIDS Coalition (New York),
Managing Editor, PWA Coalition Newsline
National Association of People with AIDS (NAPWA)
Wednesday, October 2, 1986
“Local Health Services:
Crisis on the Front Line”
American Public Health Association
Las Vegas, Nevada
In the Fall of ’84, I found myself tethered to an IV pole in room 557 of a building named after a homophobic–reputedly homosexual–Catholic cardinal in a hospital named after a Catholic saint. That week, the current Catholic archbishop was demonstrating his peculiar concept of Christian charity by opposing–with much fanfare–a mayoral executive order which offered limited protection from discrimination in employment, housing and public accommodation to lesbians and gay men.
That day, a Village Voice headline screamed from every newstand that what it referred to as the “AIDS virus” had been “found in the saliva of two patients.”
My breakfast grew cold outside my room on the floor where it had been left. As I rang for the nurse, a middle-aged black man, wearing a surgical gown, gloves and a mask, skitted nervously across my room (keeping close to the far wall). He flipped a switch which turned on the rental TV and fled.
I paused to consider whether the tableau I formed might well be the quintessential image of an urban gay man in the Reagan ’80s: sick; shunned; frightened and frightening; and largely unprotected by either law or popular opinion.
There in the largest gay ghetto on the East Coast, I found myself dependent on the kindness of some very strange strangers.
* * *
I begin with this particular image because I think it captures life in what I call the “AIDIES.”
Ultimately, AIDS is just a disease–one that causes a great deal of pain and suffering and death. In this sense, the experience of AIDS is probably not much different from other diseases which have a high mortality rate.
But it’s important to keep coming back to the brutal but simple fact of AIDS as a disease because the temptation is so great to spin out of control interpreting the social and political “meaning” of AIDS. The temptation to strangle some greater “meaning” out of AIDS–to see it as somehow the quintessential disease of and for the ’80s–the temptation to speak about the “truth” is present for AIDS in a way that is not so for other diseases.
For me and my fellow members of the People with AIDS Coalition, AIDS is about living daily with the very real possibility that tomorrow–or maybe the day after tomorrow–we may be dead.
AIDS is about bed pans and respirators. It’s about loss of control–control of one’s bowels and bladder, one’s arms or legs, one’s life. Sometimes the loss is sudden; sometimes torturously gradual. It’s about the anticipation of pain as well as actual pain itself. It’s about swelling and horrible disfigurement, the fear of dementia. It is horror.
AIDS is the moment to moment management of uncertainty. It’s a roller coaster ride without a seat belt. Once this ride begins, there is never a moment when the rush of events that swirl around you stops long enough for you to get your bearings. AIDS is like motion sickness except you realize that you’ll never stop moving–one way or another, you’ll be dealing with AIDS for the rest of your life.
It’s like standing in the middle of the New York Stock exchange at midday: buzzers and lights flashing, everyone yelling, a million opinions, a momentum.
Some of us who’ve seen too many friends die–who’ve had to remove too many lives from our Roladex’s–talk about “the look” and “the smell” which characterize the terminal stage of AIDS. Although “the look” varies from person to person, it’s essentially the look of some one who has just seen clearly–perhaps for the first time–the image and imminence of his own death. The eyes are sunken with resignation and wasting, yet wide open with terror; vacant yet certain. It is a look I’ve only seen elsewhere in gruesome photos from the holocaust.
“The smell” is like slightly rotten oranges moldering on the street in a cardboard box on a hot summer day–sprayed over with Lysol. It is the smell of death.
* * *
You see? There I go. I’m already resorting to metaphor and simile–circling around the real thing itself–because there don’t seem to be words adequate to the task of communicating the horror of this thing.
What I’ve just tried to describe is the experience of dying from AIDS. And certainly the experience of AIDS for a great many of those diagnosed is the experience of dying. But if I can challenge one assumption about AIDS in this speech, it is assumption that everyone dies from AIDS–that AIDS is an automatic death sentence–that AIDS is only about dying.
I’m sure we’re all familiar with that tiresome, boilerplate paragraph which always appears somewhere in an AIDS story–the one that says that AIDS-is-a-disease-which-attacks-the-body’s-immune-system. It usually ends with the authoritative assertion that AIDS has a 100% mortality rate.
There are a handful of us–estimated variously at 10 to 18%–who happen to be quite alive more than three years after our diagnosis and who intend to be alive for many more years. The unthinking repetition of the notion that everyone dies from AIDS denies both the reality of–but more importantly, the possibility of–our survival.
I want to expose the tautology behind the definition of AIDS. When most people use the word AIDS–as in CDC-defined AIDS or full-blown AIDS–they mean the terminal stage of a spectrum of illness. If you’re only going to count as frank AIDS those cases which are terminal, then by definition the mortality rate is going to be 100%. Death from AIDS will become a self-fulfilling prophecy because anyone who doesn’t have the good sense to die will be demoted from the fraternity–if they’re not dead within three years, maybe they never really had AIDS.
What I’d like to shake from the definition of AIDS is the sense of hopelessness which seems to have been built in. It is my own perception that the disease is changing–people are living longer–seem to be somehow less sick. Perhaps AIDS is becoming less virulent. Or possibly we have a better handle on it now–earlier diagnosis of opportunistic complications–more accurate treatment regimens for the specific infections. I definitely suspect that one reason the mortality rate for AIDS was so high in the early days was the rush to aggressive chemotherapy. Most of my friends from the early days seemed to have died from their treatments–not the diseases they were being treated for.
I’ll finish my diatribe on survival by saying that we must begin to make room for it–to admit it as a possibility. I know it may be painful. The one consolation from believing that AIDS is 100% fatal is the comfort of some certainty about a disease for which so little is certain.
If AIDS is truly 100% fatal, then those caring for us know how the roller coaster ride is going to end. They can humor us in our protestations of survival and hand us Kubler-Ross and ration out their emotional strength, certain that however draining–however horrible it is to watch the progression of AIDS–the end is inevitable. Admitting the possibility of survival will require that others around us suffer the disappointment of our hopes along with us in a new way. It’s a tall order, I know, but it’s time to begin admitting hope into the AIDS picture.
* * *
I have met a great many others with AIDS. It’s possible to identify two general types of responses. For some, AIDS is entirely about dying. For others, AIDS is a challenge to begin living.
Now, I don’t want to reduce AIDS to some “est” seminar–or to create the impression that all you need to do to survive AIDS is to have the right attitude. But I have found time and time again that those who give up–who say to themselves “death from AIDS is inevitable, so why fight?”–seem to go very quickly. And the quality of their last days is often clouded over by that bone-chilling, grey fog of despair and hopelessness.
In contrast, those who are fighters–who dig in their heels and say “Goddamit, I’m not gonna let AIDS control my life!” seem to hang around a lot longer. In addition, the quality of their lives often takes on a glow–a sense of purpose–that in many cases was previously lacking.
I myself have chosen to fight AIDS tooth and nail. After an initial rather serious depression, I rallied enough to say that whatever time I had left, I was gonna make the most of it. My strategy was to get on with the business of living and deal with each obstacle–each illness–as it presented itself. And my life since my diagnosis has taken on that sense of extraordinary vitality–that immense feeling of the preciousness of each moment–that others living during wartime have often described.
Again, I don’t wish to create the impression that I’m glad I have AIDS. But I’m forced to admit that if I survive–as it now appears I may–it will have been the best thing that ever happened to me. I am more the person I always wanted to be now–in a word, happier–than at any time prior to my diagnosis.
And I’m certainly not alone in my perception that hope is necessary to live with AIDS on a daily basis. I am but one of many founders of a quite unique movement–the People With AIDS self-empowerment movement. I can’t be more eloquent than the founding statement of the National Association of People with AIDS:
We are People with AIDS and People with AIDs-Related Complex (ARC) who can speak for ourselves to advocate for our own causes and concerns. We are your sons and daughters, your brothers and sisters, your family, friends and lovers. As people now living with AIDS and ARC, we have a unique and essential contribution to make to the dialogue surrounding AIDS and we will actively participate with full and equal credibility to help shape the perception and reality surrounding this disease.
We do not see ourselves as victims. We will not be victimized. We have the right to be treated with respect, dignity, compassion and understanding. We have the right to lead fulfilling, productive lives–to live and die with dignity and compassion.
Our purpose is to promote self-empowerment of persons with AIDS and ARC by:
- Enhancing understanding through education and support
- Becoming equal partners with our health care providers and service organizations
- Helping develop and implement the necessary services and programs that will enhance the quality of our daily lives; and
- Continuing to have control over and direction of our lives.
* * *
So what is it like to live with AIDS? Back in the Spring of 1983, in my first address as a publicly identified PWA, I described for the New York Congressional delegation what People with AIDS talk about. What I said then is unfortunately still relevant to the experience of having AIDS today:
“Whenever I am asked by members of the media or by curious healthy people what we talk about in our [support] groups, I am struck by the intractible gulf that exists between the sick and the well. What we talk about is survival.
We talk about how we’re going to buy food and pay rent when our savings run out. We talk about how we are going to earn enough money to live when some of us are too sick to work.
We talk about how it feels to get fired from our jobs because of unjustified fears of raging and lethal contagion–fears based on ignorance and unfounded speculation….
We talk about the pain we feel when our lovers leave us out of fear of AIDS.
We talk about the friends who have stopped calling.
We talk about what it feels like when our families refuse to visit us in the hospital because they are afraid of catching that–quote “gay cancer” unquote.
We talk about what it feels like to be kept away from our nieces and nephews and the children of our friends because our own brothers and sisters and friends are afraid we’ll infect their children with some so-called mysterious, new killer virus.
We compare doctors and treatments and hospitals.
We share our sense of isolation–how it feels to watch doctors and nurses come and go wearing gowns, gloves and masks.
We share our anger that there are doctors and health care workers who refuse to treat AIDS patients.
We share our fears about quarantine….
Mostly, we talk about what it feels like to be treated like lepers who are seen as morally, if not literally, contagious.
We try to share what hope there is and to help each other live our lives one day at a time.
You see, what we talk about is survival.”
* * *
It is another principle of the PWA movement that when one speaks as a PWA or a PWArc, it is useful to briefly state what one’s own medical history has been–much in the way that other experts list their credentials. The complexities of my own case will segue nicely into a discussion of what I call “the black hole of ARC–AIDS Related Conditions.”
In the Spring of ’81, when the CDC made its first report, I was sick: fevers, night sweats, thrush, weight loss, diarrhea and malaise. The standard tests showed nothing conclusive.
As it happened, my doctor was Joe Sonnabend–a microbiologist of international repute who had left the research world to go into private practice. He initiated some of the earliest AIDS research using samples provided by me and other patients from his practice. As a result, Dr. Sonnabend was able to tell me as early as December 1981 that I had almost no T-helper cells left and that other blood parameters indicated that I was dangerously immunosuppressed. My results, he warned, were identical to those of his patients who had–or who were soon to develop–PCP and KS.
The CDC case control study of the first 50 gay men with AIDS found a medium number of lifetime sexual partners of 1,150 and a history of many sexually transmitted diseases. I fit that profile. By the age of 27, I had had an estimated 3,000 sex partners in bathhouses and backrooms. Not coincidentally, I had also been diagnosed with the following diseases: innumerable bouts of gonorrhea of the throat, penis and anus; syphilis; non-specific urethritis; chalymidia; candida albicans; endless episodes of entamoeba histolytica, giardia lamblia; salmonella; shigella; hepatitis A, hepatitis B, and hepatitis non-A, non-B; venereal warts; herpes simplex Types I and II; Epstein-Barr reactivations; repeated cytomegalovirus infections; disseminated varicella zoster (shingles); and finally, cryptosporidiosis and AIDS.
The question for me upon diagnosis was not so much “Why me” as wonder at how I had I remained standing on two feet so long.
Although I can understand why most gay activists shudder at the implications, I suspected then–as I continue to suspect–that, bluntly put, a small subset of promiscuous gay men (including myself) unwittingly managed to recreate disease settings equivalent to those of poor third world nations and junkies.
So, in December of 1981, I had reason to be very frightened. Dr. Sonnabend was blunt: he told me that if I didn’t stop practicing what was to become known as “unsafe sex”–if I continued to barrage my immune system with sexually transmitted infections–I might well die.
If there had been such a term, I would in early 1982 have been diagnosed with ARC–AIDS related complex. At the time, the very namelessness of the condition compounded the terror.
I continued to lose weight–to sleep 12 or 14 hours–to vomit up my food. And I had bloody diarrhea 8 to 10 times a day. In June of 1982, I collapsed in my home from dehydration and was taken to the emergency room with a 104 degree fever by Dr. Sonnabend’s physician’s assistant.
During that hospitalization–my first in a series–they finally diagnosed my problem as cryptosporidiosis–a parasite which, in the cryptic words of the hospital doctor, had been “previously found only in livestock.”
Cryptosporidiosis–which we PWAs refer to as “crypto”–is one of the diseases which qualifies one for an official diagnosis of AIDS. When a very handsome intern asked me a lot of questions about my sexual history, indicating that he needed the information to fill out an “AIDS report form,” I had the first frightening sense of being a statistic. I knew that the odds of survival were very small.
I had a mixed reaction to my diagnosis: on the one hand, I was relieved to finally know what had been making me so sick for so long; on the other hand, being told I had AIDS and that my opportunistic infection was untreatable was devastating.
The hospital doctor was blunt: there was no known treatment for crypto; they’d keep me hydrated and I’d either beat it or I wouldn’t. If I survived this bout, she suggested that I join an AIDS support group–the first in New York–and she gave me the number of Dr. Stuart Nichols who was putting the group together.
* * *
Well, as you can see, I did survive that bout of crypto. And I’ve survived other infections–herpes zoster and several pneumonias and bronchitises. I’ve been bronchoscoped and biopsied, punctured and transfused and experimented on since that summer of ’82. But I’ve somehow managed to avoid the big P–pneumocystis; My guess is that the Bactrim–which I’m lucky enough to be able to take prophylactically–has cleared up the various pneumonias and prevented me from getting pneumocystis.
As far as I and my doctors (and, incidentally, my insurance company) were concerned, as of June 1982 I had AIDS–CDC-defined AIDS–full-blown AIDS–frank AIDS–call it what you will.
But the clinical reality of AIDS is actually a lot more complicated than it seems on paper. There is clearly a range of illness. There are some people who’ve have, say, a few lesions who don’t otherwise look or feel sick. There are people with AIDS-Related Conditions for whom it is an effort to get out of bed in the morning–and who are in and out of hospitals all the time. In my own case, there has been some debate–much of it painful for me–about whether I “really” have AIDS or whether I “only” have ARC. I remember one AIDS conference where three doctors got into a shouting match over my diagnosis.
Dr. A suggested that if all I’ve had is crypto–if I hadn’t “yet” had PCP or KS, then as far as he was concerned, I didn’t really have AIDS. He suggested the novel notion that I was “on the cusp between ARC and AIDS” (I thought this was an interesting mix of astrology and epidemiology).
Dr. B pointed out that I was AIDS, but only by a technicality. (An interesting mix of sports and epidemiology–the sport of epidemiology, if you will.) Since the CDC lists crypto in humans as one of the diseases indicative of immunodeficiency which qualify one for a diagnosis of AIDS–and since I was in a risk group–and since I had all other immunologic parameters indicative of AIDS–then, he said, it had to be admitted that I met the technical definition of AIDS.
Dr. A countered that crypto should be removed from the CDC list.
Dr. B pointed out that while that may well be the case, the fact was that crypto has not been removed from the list and that therefore I had AIDS.
Dr. C pointed out that the debate, in addition to being offensive, was Talmudic. (The religion of epidemiology?) What, he asked, are we debating? At least a thousand individuals are believed to have died from ARC. These are people whose immunologic parameters match those of us with AIDS but who have died from diseases which happen not to be on the CDC’s arbitrary list. Does it mean much that they are therefore disqualified from a diagnosis of AIDS?
In an interesting footnote to this particular incident, I received a letter from Dr. A which I passed on to Dr. C as evidence in favor of his point. Dr. A sent me a reprint of an article which suggested that crypto may not be so rare in humans as was previously thought and that therefore crypto should either be removed from the CDC list or that, alternatively, some standards for the severity of crypto should be set. Dr. A suggested–and I’m not joking–that if I’d produced 10 liters of stool of a particular liquid consistency within a particular time frame, then that would be AIDS. But anything less than 10 liters …well….
And so, I thought, it’s come to this: one must ante up the proper amount and consistency of stool to qualify for the AIDS fraternity. Ivan Illich of Medical Nemesis fame would have a field day with that one.
As my own story illustrates, “AIDS” is a slippery term which is often sloppily used. From the standpoint of emotional anguish, having AIDS-Related Complex (ARC), lymphadenopathy, being antibody positive–or for that matter, being a member of a so-called high risk group–differs from the experience of having CDC-defined AIDS mostly as a matter of degree.
The stigma attached to the so-called lesser forms of AIDS is essentially the same as for strict, CDC-defined AIDS. Those in the general population who are afraid of AIDS don’t bother to make distinctions between AIDS, ARC, and lymphadenopathy. ARC, after all, is an acronym within an acronym. The parents of a gay man who has flown home to announce that he has been diagnosed with AIDS-Related Complex won’t hear much beyond the word AIDS.
The horror of CDC-defined AIDS looms in the distance and informs the experience of the so-called lesser forms of AIDS. The understandable focus on CDC-defined AIDS obscures the little known fact that at least a thousand men are thought by federal officials to have died from ARC–died from diseases which were clearly AIDS related, but which don’t happen to be on the arbitrary list of a dozen or so diseases which qualify one for an official diagnosis. And, as I’ve said, there are those with ARC who look and feel sicker on a day to day basis than, say, an individual who had one bout of PCP two years ago.
Much anxiety is caused by the fact that there really isn’t a very good definition of ARC. Such as it is, its kind of a “two from column A and three from column B” diagnosis–sloppy at best. In fact, there are many possible explanations for why a gay man might be having night sweats or diarrhea or thrush which have nothing to do with AIDS or ARC. Likewise, the mere fact of a depressed T4/T8 ratio has many possible causes.
There are some doctors for whom the definition of ARC is a gay man with a cold–doctors who diagnosis pneumocystis over the phone. There are others who steadfastly withhold the diagnosis of ARC because they believe the term to be sloppy. For every man with AIDS and ARC who is aggressively–desperately–denying his diagnosis, there is a man mildly symptomatic going from doctor to doctor hoping for a diagnosis to make sense out of the confusion and anxiety.
* * *
In the end, as I said earlier, we all must make our own peace with AIDS. For myself, I’ve finally decided that everytime I speak, I’ll tell my story–what I’ve had and what I haven’t had. Then, if someone wants to believe I have ARC rather than AIDS, fine. If it matters to someone that I meet the CDC-definition of AIDS, that’s fine too. All I know is that I’ve been in and out of hospitals during the last four years with a depressing regularity. Although I do not believe that HIV is “the cause” of AIDS, I am apparently a viral factory. I have the dubious distinction of knowing that a cell line for an HIV antibody test was made from virus isolated from me. (I’m patient A-28 in a University of Nebraska study, but don’t tell anyone.)
* * *
Finally, the stigma of AIDS often extends to healthy members of so-called high risk groups. In many unfortunate ways, the stigma I have suffered as a gay man with AIDS has been an exaggeration of the stigma I have suffered as a gay man. The imagery and language of sickness–mental, moral and medical–link the perception of AIDS and gay maleness.
Growing up in Ohio during the ’60s, the overwhelming message which I absorbed about my then-secret sexual desires was that I was “sick.” Coming out as a gay man was for me a process of refuting the stigma of sickness and undoing all that damage in order to get on with the business of living and loving. But because AIDS imagery often resonates uncomfortably with the language of sickness historically associated with gayness–because in many circles gay maleness and AIDS are now synonymous–most discussion about AIDS implicitly if not explicitly communicates messages about gayness as well. I no doubt belabor the obvious when I state that the aggressive marketing of AIDS as a conflation of gay male sex, disease and death is having a subtle but corrosive impact on many gay men’s self-perception.
Today, gay men are often presumed guilty of AIDS until proven innocent. A gay male friend of mine was recently hospitalized with a herniated disk. Although otherwise completely healthy, blood precaution signs–the same as those used for AIDS–were put up outside his room. As a result, he now must continually confront the rumor that he has AIDS and is merely denying it.
* * *
During the last four years, I have careened emotionally from fear to anger to hopelessness to confusion to passionate pride in being a gay man. AIDS has undoubtedly made being gay more difficult for many gay men; but it has also had the effect of making some gay men fight harder to convince themselves and the world that gayness is something to be proud of. As the success of AIDS service organizations demonstrates, AIDS has encouraged some to come out who might never have done so under any other circumstances. And the sight of a people mobilizing to take care of those in their community who are sick is a legitimate cause for pride.
In Illness as Metaphor, Susan Sontag reminds us that “illness is not a metaphor, and that the most truthful way of regarding illness–and the healthiest way of being ill–is one most purified of, most resistant to, metaphoric thinking.” (Illness as Metaphor, p. 3). I could not agree more.
And yet, from my vantage point as a citizen of the “kingdom of the sick,” I have watched those from the “kingdom of the well” aggressively market AIDS, tailoring the message for various audiences and purposes. I would argue that we must be mindful of the long range consequences of what we say about AIDS and gayness and what we uncritically permit others to assert authoritatively about AIDS and gayness.
A lot will depend on science finding answers to the terrible mystery of AIDS and upon the strength of individuals and the gay community to withstand AIDS and its fallout.
* * *
I’ll end by saying that I’m a skeptic. If I believed everything I was told–if I believed that tiresome boilerplate that AIDS is “100% fatal”—then I’d probably be dead by now. (I always was an overachiever.) If I didn’t arm myself with information–with diverse views, I would be unable to defend myself from the madness and gibberish which daily assault those of us who have Acquired Immune Deficiency Syndrome.