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Gay Peoples Chronicle

Healthwise-My Concerns as a AIDS Physician

By JANET ARNO, M.D.-

November 1985

Each time I hang up the phone after yet another call from someone fearful of contracting AIDS, I wonder what AIDS is doing to "the rest of us"--those who don't have AIDS...but, will live with AIDS, possibly forever.

Whether I'm enraged by the refusal of a healthcare worker to provide necessary services for a patient, or feeling empathy for a man who has been told that his dearest friend and lover_has AIDS, I can't help but feel that our intense effort at public education is inadequate. This is a problem which cannot be separated from the obvious need, from the nitty-gritty details of risk--how what, when, where; and again, how. Also, there is the problem of our collective inability to comprehend limited life, that is not perfectly free and not immortal.

Those of you who don't have AIDS: when was the last time that you thought you did, even though all reasonable avenues of deduction told you that you didn't? Do you remember what it felt like for just that second, that brief second when you weren't really sure? Not everyone has had that experience, but I think many have. I would like to discuss the source of that powerful surge of fear that is unchecked and so difficult to address.

Several observations concern me.

The first comes from patit

eats with AIDS. When with a patient and tell him, for the first time, that he has AIDS and what that means I ask him to identify just one person to whom he is close. I ask this to identify someone with whom the patient can share the burden of this information, the battle of the disease, and possibly, the experience of aying and death. This approach has been alarmingly unsuccessful. Few patients can identify even one person who will remain in such a relationship during the course of the disease.

The second observation comes from New York, where healthcare workers have observed a decrease in the incidence of gonorrhea. Some have interpreted this to herald a new era in gay sexual practices, with an enphasis on interpersonal relations. This may be so; but I wonder if it also reflects an increase in isolation of some men from each other because of fear? Perhaps it reflects staying away from a support network which has been crucial in the dissemination of valuable information and, especially with regard to AIDS, has often been the most powerful in guiding clinical research and education efforts.

The

final observation comes from the recent Men's Survey, where I sensed that the participants (I actually spoke to only a few) seemed somehow more somber. Perhaps they were just tired after a long day's work, or perhaps a bit more aware of the reason we must work together. The reason these observations concern me is that during a time when both individual and public resour-

comes from many sources. Along with the dazzling spectrum of answers that medicine and technology do provide comes an expectation, a sometimes healthy optimism, that anything can be conquered. We are immortal, aren't we?

AIDS is a disease of the young and healthy. With irrefutable finality it chanes the expectations so carefully woven into each of us.

Few patients can identify even one person who will remain in such a relationship during the course of the disease

ces will be severely challenged, community support will become increasingly important. Often because of the homophobic nature of the workplace and "public eye" many men must isolate their professional or "public" lives from their private ones. In these circumstances limiting social interaction becomes unsettling. Hopefully, it is an unsettling that will result in a real transition (although William Safire would cringe at such a use of unsettling).

How

Now to the problem. does all this isolation affect our fear of limited life? I can remember a discussion in a high school French class about how human beings in war prepare themselves to kill another human being: how it is necessary in every way possible to dehumanize the target, to isolate him from oneself, who is, after all, different.

Isolation plays at least two roles. It helps us live with death. Doctors sometimes isolate themselves from their patients that way and friends sometimes isolate themselves from dying friends in the same way. Patients isolate themselves, too, struggling to maintain independence at the expense of pain, fearing being dependent and a burden on those they care most about. While it serves its purpose to avoid death temporarily for some, it ultimately results in failure to accept death as a part of life.

Does Isolation then result in this well-hidden overwhelming fear of death? No, of course not; it maintains that fear. And it makes it difficult for those of us who must deal with it to do

50.

Our inability to understand the limitations of life, one of which is death,

is

For many, its presence the first time we've had to examine our own "mortal-

ness." But for someone whose life has been buit on, and depended upon, isolation, it is much worse. No longer can we think that we can live to the age of 108, become asexual doesn't sexuality stop at 42?), and die without anyone knowing our private lives. Not only does someone who might get AIDS have to face death and a severe limitation in sexual contact, but he has to face the prospect of knowing that his private life has been exposed. Is it any wonder that the uncontrolled panic so many people face is so powerful?

There is no good time to die. In our 20's we're just getting started; in our 30's and 40's we are always on the verge of achieving the success we seek; in our 50's and 60's we finally begin to have a chance to enjoy that which we have earned. The fact is that we are limited in life; and its complex fulfillment depends on accepting death as set forth by many, including Dr. Elizabeth Kubler-Ross: denial, anger, depression, and acceptance. This cannot be done in isolation.

As we counsel those with positive antibody to HTLV-3 we need to address not only the details of what this means in terms of prognosis, but also help them to understand and address the issues of isolation. This requires not only the input of physicians, nurses, social workers and other health area personnel but also of well informed and sensitive members of the community to help with the transitions necessary to complete the stages of accepting this newest limitation of life.

The word "plague" had just

been uttered for the first time. At this stage of the narrative, with Dr. Bernard Rieux standing at his window, the narrator may, perhaps, be allowed to justify the doctor's uncertainty and surprise--since with very slight differences, his reaction was the same as that of the great majority of our townsfolk. Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. There have been as many plagues as wars in our history; yet always la gues and wars take people equally by surprise."

In fact, like our fellow citizens, Rieux was caught off his guard, and we should understand his hesitations in the light of this fact; and similarly understand how he was torn between conflicting fears and confidence. When a war breaks out, people say: "It's too stupid; it can't last long." But though a war may well be "too stupid," that doesn't prevent its lasting. Stupidity has a knack of getting its way; as we should see if we were not always so much wrapped up in ourselves.

In this respect our townsfolk were like everybody else, wrapped up in themselves; in other words they were humanists: they disbelieved in pestilence. A pestilence isn't a thing made to man's measure; therefore we tell ourselves that pestilence is a mere bogy of the mind, a bad dream that will pass away. But it doesn't always pass away and, from one bad dream to another, it is men who pass away, and the humanists first of all, because they haven't taken their precautions. Our townsfolk were not more to blame than others; they forgot to be modest, that was all, and thought that everything still was possible for them; which presupposed that pestilence were impossible. They went on doing business, arranged for journeys, and formed views. How should they have given a thought to anything like plague, which rules out any future, cancels journeys, silences the exchange of views. They fancied themselves free, and no one will ever be free so long as there are pestilen-

ces.

--from The Plague, by Albert Camus

Janet Arno, MD, is a wonderful person. In addition, she works at University Hospitals with persons with AIDS as an infectious disease specialist. I am lucky to have her as a friend. We are lucky to have her as a friend.

Theodore R. Wilson