Surviving and Thriving with AIDS:

Hints for the Newly Diagnosed

Michael Callen, Editor  


  ©1987 PWAC

NOTE: THIS IS OLD NEWS,
posted for historical research only!
The medical information herein
is severely outdated!

EMOTIONAL RESPONSES TO DIAGNOSIS

SONGS OF HOPE
by Michael Calvert

I sing my songs of hope.
Songs offered up in praise,
to rid me of my sorrow
over long lost better days.

I sing a song of patience,
for it seems to ease the fears
of not knowing what tomorrow brings,
or how to stop the tears.

I sing a song of silent joy
for I've come to know my heart,
and let that show in all I do
and believe it is the start

Of special songs as yet unsung,
to days still far away,
of dreams I never dreamed I'd have,
of games I want to play.

I sing a song of loving trust
for deep inside of me,
I know there is a will to live
that sings eternally.


CHOOSE LIFE
by David Garfield

[EDITOR'S NOTE: The following speech was delivered by David Garfield in 1985 at the Unitarian Church of All Souls in New York City. As a result of David's honest and moving presentation, the Unitarian Church became one of the earliest financial supporters of the PWA Coalition Newsline.]

My name is David Garfield and, among many things that I am, I am a person with AIDS. The challenge of this disease has changed my life--and in many positive ways. I'm going to speak only briefly about the atrocities and hysteria that attend this disease; I would rather let Life Magazine do that. The absence of humane response in funding, in education, in service is its own savage advertisement. The world has always had its noise to scream at us, to drag us down. And the world has always been particularly embarrassed by its unwanted children and by sex--especially joyous and different sex.

I dream of a world where society looks into its heart and, seeing its private pain and fear, finally embraces us--its unwanted--and weeps healing tears for us. I imagine a medical response that reconciles the breach between holistic care and traditional technology. And I look again for a social and emotional response by this, our gay community, that eschews the factionalism and egotism so grossly unnecessary now.

But we here do not finally need any of these external sanctions for our healing and our work. I am here now with every breath I take. I'm not going to get caught up in the "what isn't" and "what was" and "what could be." The power is always in the present moment.

I want to ask something very simple from you.

Please turn to the person next to you and introduce yourself in any way you feel comfortable--you could shake their hand or say your name or say "Hello" or look quietly into their eyes.

And now introduce yourself to the person on the other side.

And now feel that energy multiply.

This is our most powerful resource--the incredible loving power that is each of us; and, when we live our community and when we acknowledge our oneness, that power amplifies and explodes in light showering down more strength, more love, and more true healing on all of us.

I am Jewish (could you tell?) and my favorite holiday has always been Passover. In it, we celebrate the miracle of freedom--liberation out of enslavement--but we also proudly insist that none are free until all are free. Do you grasp that level of responsibility?

Again, in Judaism, the prayer for the dead finds all its meaning not in emphasizing death, but in celebrating life and the boundless gifts and opportunities that confront us here.

We are all wounded until we are all well.

I know now that I came here to be with you today, that I wrote this speech, finally to wash away any of the polite propriety, the fear, the guilt that still muddles me and to declare myself unreservedly as a gay man, as a man capable of health and love, and as a human being worthy of all life's joy.

In our brave and gentle spirit, we learn there is always a choice to be made. The world is changing very swiftly now. And in the blink of an eye we can align ourselves with self-determination, self-respect and light.

And when the heart opens, anything is possible.


I'M ANGRY...
by Ken Meeks


I'm angry because people keep trying to make me a patient or a victim instead of a Person with AIDS...

I'm angry because there is this life-threatening disease cutting down young people in their prime...

I'm angry because the President of the United States keeps denying the importance of funding AIDS research and education...

I'm angry because PWA's are discriminated against in housing, restaurants, and employment...

I'm angry because hospital workers, who should know better, still insist on masks, gloves, and gowns just to enter a PWA's room...

I'm angry because mothers in Queens refuse to be educated and retreat instead into emotional responses...

I'm angry because Mother Theresa thinks PWAs can be sent to camps and treated like lepers...

I'm angry because the media keep referring to AIDS as "always fatal"...

I'm angry because, at a time when they need them most, PWAs are rejected by society and their own families...

I'm angry because people are still practicing compulsive/obsessive sex in parks and subway restrooms...

I'm angry because insurance companies emphasize profits and death instead of emphasizing life...

I'm angry because some religious people see AIDS as God's wrath instead of practicing the charity of human kindness...

I'm angry because I don't know whether suburban teenage suicides are related to these young men finding out they're gay and what AIDS may mean to them...

I'm angry because too many physicians are still making "shoot from the hip" diagnoses, whether AIDS or non-AIDS...

I'm angry about the "them and us" mentality which suggests PWAs cannot participate in their own healing and living.

BUT IN SPITE OF ALL THAT, WE WILL SURVIVE!


GRIEVING
by Bobby Bloom
(April 1985)

I feel the sunken wind
trapped upon the ocean floor
Surrounded by the heavy water
it cannot rise

I remember the wind aloft
high in sky and free--
I long for this again like my old friend

Grieving goes on and on
like an occasional bubble
rising to the surface--
Bursted
it sheds a vale of tears upon the
land I stand on



TO BE OR NOT TO BE
by Joey Colello

Hi. My name is Joey. I was diagnosed in December with PCP. After three weeks of hospital stay and just general misery, my only concern was to survive and fight to stay alive. After exhausting all my energy for a quick recovery--which did happen--unfortunately, since December, I've been hospitalized four more times. My condition has been a constant downhill struggle of multiple infections, removal of a testicle, various skin disorders and other unpleasant experiences.

But I have finally reached a point where I'm in control--not my physicians.

When we're first diagnosed, we go through different emotional stages: shock, depression, anger and finally acceptance. It's really a drag to have to deal with shock, depression and anger; but once you reach acceptance, it's the first time the disease makes some sort of sense.

I'm not a religious or spiritual person, but I feel that I, as well as other PWAs, are being groomed and prepared for our next life. I do find that somewhat comforting.

I no longer receive any treatments. I just want to be comfortable. Some PWAs look at it as giving up the fight. But it's not.

Our destinies and fates have been decided for us. We may lose the fight, but we can still win the war.

Peace.


YOU CAN BE RENEWED
by Michael Calvert

Hi!!! My name is Michael Calvert. I am 27 years full. I don't feel old much more than a couple of times a day, and I make an effort to complain about it. I was diagnosed with KS/AIDS on July 23, 1985. It was a sad day for all of us, since on that same day we also learned that Rock Hudson had been diagnosed.

A lot of awareness "came out" on that day. My self-awareness had begun a year before in a wonderful acting class and was heightened by once a week psychotherapy sessions at the National Institute for Psychotherapy.

I am grateful for the time I spent on self-empowerment before my diagnosis. It allowed me to accept my condition and provided a firm base to begin the healing that I know is possible and which is the most challenging and fulfilling experience I have ever had. (AND I've had many!)

It is very scary for me to be threatened in any way, but I've begun to meet my fears and overcome them. I expect it to take some time, possibly the remainder of this life, and it is comforting to know that there are many, many people who are willing and able to help me and be part of the most difficult time in my life.

It seems to me that the moment of fear calls for a response. Many of us wait too long to do this, but keep in mind that it is never too late to ask for help and/or guidance.

In this crisis you can be sure that there are brothers and sisters in your family that you did not know you had. If you are like me, you may hesitate to call on these.

To me, fear and anxiety are laziness. I know because I am too often affected by indecision. I've come to find that the worst fear is that someone might say "NO!" and that this fear is easily overcome by an active "YES!" If you don't have the energy, then ask someone to speak for you; your request for help is the action that will break the fear.

I suppose I could go on forever, and believe me, if they ever offer that choice up for grabs--I'm GOING FOR IT!! You can be renewed!


DOWN
by Max Navarre

It seems that everything I write begins with, "when I was diagnosed...." It's as if my life has been divided into two periods: before diagnosis and after diagnosis. B.D. A.D.

I had a psychiatrist last year. I had been in therapy before, with mixed results. Being the "result queen" I had always been, I never had experienced the kind of instant gratification I needed to maintain my interest. But adjusting to AIDS was a very specific problem. So I started therapy with the idea of working on my transition from being a person to being a person with AIDS. I got a lot from the experience.

Early in my illness, I was very confused and hurt. I felt that I had been robbed of my future, that my life was over and I was existing in a kind of postscript. I was frustrated because I still had plans and goals I wanted to achieve. I understood that I was not dying, that I had life to live on a daily basis. But, except in theory, I didn't truly believe that my life could still have richness and meaning. I didn't believe that I could fulfill my goals with AIDS hanging over me.

With therapy, I came to see that my diagnosis was an ending. It was not an ending of my life. It was an ending of my willingness to settle for less than I wanted in my life. I saw that life with AIDS could be a beginning. I could get honest with myself, and finally have the kind of relationships I wanted. I could do the work I wanted and pursue my goals. I could be the person I had always wanted to be, but had never been willing to risk being. I was able to make a leap of faith.

At the same time, I was aware of the problem of denial. By that, I don't mean denial of my condition. From the very beginning, I was quick to identify myself as a person with AIDS. I had no overriding personal considerations that made it necessary for me to keep quiet about my illness. It was important to me that everybody around me know what was going on. I also had no qualms about being public, so I went public.

There's another kind of denial. It's the denial that says, "I'm OK," when I'm not, that says, "everything is under control," when it isn't. I had a lot of experience with that kind of thinking in other areas of my life, so I was watchful for it in my life with AIDS.

I aligned myself with other people with AIDS who shared my beliefs about taking the active role. I began writing and speaking about AIDS, I became involved with various projects. I helped to create and promote a self-empowerment workshop for people with AIDS and I began travelling to other cities with that workshop.

I always made time for myself. I saw my doctor, acupuncturist and therapists. I stayed on my diet, did my meditations. I felt that I wasn't taking on more than I could handle. My presence was sought, my opinions were sought. I took pride in my impossible schedule, and my ability to keep up. People warned me about doing too much. I shrugged them off. I felt great physically. I must be doing something right.

What happened was that someone I loved very deeply started to die.

One of the more tragic aspects of AIDS is that none of us escapes losing friends. I had had friends die before. But never had it been someone so close, someone whose ability to survive I had counted on so completely.

David Garfield was one of the first people I met after diagnosis. He was articulate, active and hopeful, everything I wanted a person with AIDS to be. He was confident in his wellness. At a time when I was looking for a role model for coping with my own AIDS, he was someone I could really look to as a power of example. In him, I found someone who personified everything I needed to believe was possible for me. Seeing David, I could believe that I could still pursue my life.

At the time, we were both volunteers at the GMHC, and we were both working on the Newsline. We started spending a lot of time together. I guess you could say we dated, although it was never anything serious. We were too alike in too many ways for there ever to be a strong sexual spark. But we were cozy.

It was around Christmas that his health started to fail. It didn't seem major at first, just the usual random symptoms to which we PWAs are subject. He shrugged it off.

He got worse. He spent a good part of January at my house. I took care of him. Much as I love David, he was a very demanding patient, and I am one lousy nurse. Strain developed in our relationship. It was only partially relieved when he was hospitalized late that month. Something had come between us. It seems now that it was fear.

My schedule really took off. I was travelling a lot and didn't see David. We spoke, often and lovingly, on the phone.

We went back to his apartment in Brooklyn. He had a home care attendant and a buddy. He got weaker. I saw him less frequently. He stopped taking phone calls.

My life started bursting at the seams. I felt tired, vulnerable. I went to visit David. He had a sweat that woke us both up, drenched, in the middle of the night. He had an hallucination. He didn't know where he was. Later, we talked about fear. I left in the morning.

I went to London. While I was there something happened. One morning I was looking out the window at the huge London sky when I felt a shift within my body, like a car changing gears. I knew I was sick. I came home to New York.

David was having a transfusion. I went to the hospital to see him. We held each other. I felt like shit. He was rosy from the new blood, looking better than he had in months. We put him in the ambulance. He went back to Brooklyn. Within two weeks David was dead and I was in the hospital with my second case of pneumocystis.

At first, I was offhand about being in the hospital. I had had PCP before, been out in two weeks, normal in another two. I'd been well for ten months. Confident that I'd be better in no time, showered with attention and flowers, I conducted my life from my hospital bed. It was business as usual.

Things turned after a week. Bactrim had made me violently ill, pentamidine started to do the same. My kidneys started to fail. At the end of two weeks in the hospital, I was sicker than when I'd arrived.

I stopped taking phone calls and began discouraging visitors. When people came, I pretended to be asleep. I couldn't eat. I got sicker. I was afraid. Regardless of how well I'd been in between, I had now had two major illnesses in ten months. With a shock I realized that AIDS might unfold for me the same way it had unfolded for some other people. I realized that I might die.

I didn't want to see anyone. I was angry and embarrassed that I was sick again. I felt that everything I had been doing for almost a year was worthless because it hadn't "worked." I knew better of course, but I had travelled all over the fucking planet telling people how to have AIDS, and now I was sick again. I was humiliated. I felt like a failure.

I was released after three weeks. My life was waiting for me and I wanted no part of it. I had surrounded myself with go getters who had a serious investment in my being able to show up, cope and function. I felt I had already betrayed my commitments by getting sick again. Now I felt I was betraying the people around me by not bouncing back. Everyone around me was ready to roll up their sleeves and help me to get back to normal and I was not ready. I wasn't better and I knew it. I pushed everyone away.

I went back on medication, this time Dapsone and Trimethaquim. I was sick as a dog. I thought about dying all the time.

I thought about David. I felt abandoned by him, angry that he'd let me down. His death threatened me because it seemed to foreshadow my own. I thought about my own actions since diagnosis. I felt like I had been a fool. In spite of myself, every controlling instinct I had had surfaced in me. I had pushed and shoved my illness into proportions that I could handle and manipulate, and it had rebelled. Even as I watched and warned myself, I had rushed into the fray to fix everything. I had taken on not only my AIDS, but everyone else's. I wanted to save everyone, even while I told myself I didn't. I wanted to save David, more than anything. Saving David was saving me. I had failed. I couldn't get out of bed to eat, wash or get dressed. Being sick had become the way I lived.

What happened next was that I got better. I finished out the medication. Suddenly I came back to myself. In two days, I was up and on my feet. In three days, I was out on my rounds.

I was myself again so quickly that I couldn't believe it. After six weeks, I was suddenly, once again, somebody I recognized. I didn't have that awful feeling of a foreign presence in my body; nobody was home but me.

I still have a lot of recovering to do. My body does some quirky things it didn't do before. I don't mind. And I have a lot of emotional recovering to do too. I don't mind that, either.

I have to forgive a lot: myself for being sick, myself for making myself responsible for being sick, David for dying, anybody for dying, myself for not saving them, my friends for not knowing what to do, whatever power created AIDS, the government for doing nothing, the people who are afraid of me, the medical establishment. Lots of people.

Mostly me. Me for not giving myself the unconditional love that I need and deserve, for not understanding that it's normal for me to try and control my disease, and that it's o.k. that I can't. I can only cope. I'm practicing. I practice being well and taking care of myself again. Really taking care of myself, not just off handedly when everything else is taken care of: giving myself time.

Resting, being alone, reading, feeling my feelings; being at home to myself is the hardest thing for me to do. DO. There's that word again. I'm always looking for something to "do."

Don't get me wrong, I still take action. Lots of action. But, I need to remember that, while I have control over the actions I take, I don't have control over the results. I can take every action I can think of, or I can sit on my ass till the cows come home. I am not what I do. And no one has the right to judge me, including myself. I am on this planet and I deserve to be here because I deserve to be here. I deserve just to be. Sick or well, busy or idle, I am myself and that is enough.




AIDS AS AN IDENTITY
by Michael Callen

As someone who's been involved with the PWA movement for many years, I've been urged to begin to record our history. On May 20, 1986, I got together with my friends Bill Burke, Bob Cecchi and Richard Berkowitz to discuss the slippery slope of AIDS. I suspect that many of the experiences related in the following conversation have been shared by others. What follows are excerpts from that discussion.


* * *


MIKE: I would like to go around and have each of you say, what has your experience with AIDS and ARC taught you? Let's start with Bob.

BOB: Well, I've gotten a lot out of AIDS. And I'm still getting a lot out of the experience. I think I was emotionally a mess prior to AIDS. I'd been through 101 disciplines and none of them were making my life work; and lo and behold, 2 1/2 years after AIDS, I feel like I have my life together. Oh, I have all the normal anxieties--but I don't think of myself now as being insane, and there were times when I did. If I died tomorrow, the last three years have been worth it. Whereas if I'd died three years ago at 39, nothing I'd gone through before would have been worth it. So, I've gotten life back, and it took thinking I didn't have life to get it. And I'd be satisfied with one more year and I'd be satisfied with 40 more years.

MIKE: What has your experience taught you, Billy?

BILL: To be flexible. How to be more sensitive to my own needs, more sensitive to my own body, more sensitive to other people's needs. It's taught me that nothing is written in stone. That there's always the possibility for change, the possibility for growth and movement and new directions. I think not only my experience of going through what I've gone through, but having gone through being there for other people who were sick has shown me that people can change, people can take charge, even when they're sick, and make some real important changes for themselves. I think it's ultimately made me a lot more tolerant of other people and what they go through. And I'm more tolerant with myself.

RICHARD: What has it taught me? It's taught me the hopelessness of people appreciating the positive aspects of pleasure, without guilt, without self-flagellation. I think we're totally incapable as a culture of standing up and saying that pleasure, sexual pleasure at least, whatever, is a good and positive thing and worth supporting--something worth defending.

And in spite of the whole sexual revolution and all the experiences we had in the '70s, it's kind of all being flushed down the toilet because we're trapped in a situation where we're at the mercy of "experts" and professionals and we feel totally incapable of empowering ourselves to knowledge, to valuing our own experience.

It's also taught me that when you're in a situation where lambs are being slaughtered, go you own way. And it's also taught me in a larger view that in America we're on a sinking ship where the strong throw the weak overboard. For me, that is a perfect metaphor for AIDS. Whether it's the healthy throwing the sick overboard or the strong throwing the weak overboard, it's really a completely hopeless situation. The only possible way out is knowledge and power. To learn from your own experience and to educate yourself. You really have to realize that it's every man for himself.

MIKE: I can honestly say that if I beat this disease, AIDS will be the best thing that ever happened to me. Because it has been a gigantic, cosmic kick in the ass. It has made me ask, Who are you? What is your life? Are you happy with who you are and what your life is? Sometimes when I say that, though, it comes out sounding like I've reduced AIDS to an est seminar or something. But however it sounds, that how I feel.

When I was diagnosed, I said to myself: Hmmm, I'm in this mess. I'm sick, and everybody writing and talking about AIDS has a different opinion. My defense was to learn as much as I could about everything. Sort of a who-are-these-people-and-what-are-they-saying-about-me strategy.

I started reading the medical journals. I started reading things like Susan Sontag's Illness as Metaphor. I read Ivan Illich's Medical Nemesis. I discovered the extraordinary feminist critique of the us/them, doctor/patient, patriarchal health care system.

I'd say I've learned to be "appropriately skeptical." There are large political forces that are trying to manipulate this whole thing for their own ends--some in the gay community itself. I realized instinctively that I needed to really keep my wits about me, so that I could separate out the various elements of what was going on.

I have had several people say that my reaction to this epidemic has been very bizarre. That, for example, arguing with doctors about the cause or causes of AIDS is a very strange thing for a patient to be involved in. What does it matter? they ask.

But to me it mattered tremendously. Because as Richard said, if AIDS was something that was just "bad luck"--if it's just "a" virus "out there," and either you have "it" or you don't have "it" and your survival depends on your genetics--if it doesn't matter what you eat, who you fuck with or what other infections you get--if you're just a "ticking timebomb" that's gonna go off whenever it's gonna go off and nothing you do or don't do matters, then I felt powerless.

But if AIDS is not a simple question of having "a" virus or not having a virus, then maybe there's something I could do about it. There was something I could do to increase my chances of survival--and to increase the quality of how ever much longer I have to live.

When I was first told I was sick--and particularly after I was diagnosed with crypto--I was told by a number of doctors and researchers what you all were told. "Well, 6 to 18 months." That seemed to be what our life expectancy was. So, after I got over being really depressed, I said, "Well, you can be really depressed again or you can use whatever time you have left to do whatever you want to do."

I took a real painful inventory. And I said, "Well, you moved to the city, or so you said, to make queer music. And instead, you've been spending a lot of time and money and energy pursuing sex and paying for its aftermath in terms of doctors appointments and being sick and hanging out in parasitology labs... And you're basically very lonely and unhappy and unsatisfied with your life."

Well, I thought, now I'm damaged goods; factory seconds. I don't have the option of pursuing sex or a lover any more--or so I thought. Now I can get on with what I really wanted to do with my life and pursue it for whatever time I have left.

So I placed an ad in the Native looking for other lesbian and gay musicians who might want to play queer rock'n'roll music. And, wouldn't you know it, I got a lover and a band out of it. (My lover is the drummer in my band, Lowlife.) And my lover and my music have made me very, very happy. And I can honestly say that I wouldn't have either if AIDS hadn't kicked me in the butt.

I've learned what the rest of you have learned. I've learned to be tolerant, but at the same time I've learned to be skeptical--to be skeptical in a tolerant way, if that makes sense. To try to not be rigid.

* * *

MIKE: OK. Now we'll go around the other way. What would you say to a gay man with AIDS based on your experience and what would you say to someone who thinks they might have AIDS. What advice would you give them.

RICHARD: I would say that the most important thing to hold on to is a belief in yourself, the ability to make your own decisions. You can't put all your trust in professionals. I mean, unless you find a doctor who's willing to work with you, explain things to you and give you options... Like I said, knowledge is power. Which means you have to remain very skeptical of things people tell you. It means you have to get a broad range of views, different opinions. You need to learn not to just be skeptical of doctors and professionals but also to be skeptical of what other people tell you--even sometimes people with AIDS.

AIDS has brought out a lot of irrational feelings in people. A lot of emotional feelings. A lot of extreme feelings. I don't feel that people are very honest about their own personal experiences.

I think that one aspect of professionals, whether its in health care or mental care or whatever, is that too many of them believe that they have to always appear to have the answers--that they have to seem cool and in control. In fact we're actually in a situation where there's incredible chaos and confusion and where many important questions remain unanswered. Unfortunately, it's in this chaotic environment that you've got to make decisions about treatment and things which may well affect whether you live or die. So the best hope that you have is to talk to people, to remain skeptical, to educate yourself as much as you can and to get maybe as many opinions as you can and to really, you know, take your time before you make any decisions whatsoever.

And I would also particularly warn people against many of the treatment options. That unless some particular opportunistic illness is an immediate emergency, to recognize that 10,000 gay men in the city have died from AIDS and they've all been treated by everything the medical establishment has to think of. None have been saved and very few have probably been helped. Try to deal with the angst of having a disease while recognizing the fact that there is no simple cure, that there are very few things that are helping. In such a situation all you can really do is try to educate yourself, get a lot of different views and take your time before you make a major decision. Proceed cautiously.

And I also think, lastly, that affection and safe sex--well, sex is not for everybody, but for those who are comfortable with what is safe and what isn't safe--I think that intimacy, affection, sexual behavior, whatever, can be wonderful. If you believe that you can have safe sex without risk--and some people do, and some people don't, then I've found even in a period where I was believing I had ARC or whatever and was very unsure about the state of my health, safe sex can be a soothing escape--provided, of course, that you don't walk away from the experience and think that you've put yourself or anybody else at risk.

BILL: I feel like I'm not in the habit of giving advice any more, but I agree with Richard that anybody who is seropositive or thinks they have AIDS or has AIDS, I think sex and intimacy are something that are basically life affirming--I mean it is life-affirming, not basically life affirming.

RICHARD: Sexuality--especially gay sexuality--is under attack. I mean, that's a given. Probably for 90% of Americans, homosexuality equals AIDS. It's disgusting. Death-affirming. And I think in such an environment, it's probably a great escape from all the horrors to have the courage to still enjoy pleasure and intimacy.

BILL: I think it's very sad to see people withdraw from intimate relationships. I can understand it, though; it's very risky to put yourself out there and risk being rejected. Because I'm sure that does happen. If you're sick, try to be patient with yourself. If you think you might be sick, try and get the best of what the medical field offers--as highly suspect as that is. Educate yourself.

BOB: Well, most of the time when I have contact with a person with AIDS, they're in crisis. Something is wrong or a problem's been created. I guess where I provide the most value when a person is newly diagnosed is acknowledging the fact that People with AIDS have died from this illness. So, right off the bat, there's a potential for death, and you know it and I know it.

Then I say, let's talk about whatever has been presented as the immediate problem: how to get through a situation in the highest quality way. And then if you don't die, if your life is in great shape and you don't die, you have a long period of time for that. If you do die, then you got something out of what was left.

I think by acknowledging death right up front anything you have to deal with right up front is easy. Cause the biggest fear for anybody is, "Hey, I might die from this." And then because my issues are always health related, in dealing with them, then it's how to get the most out of the system. What do you have to say to the nurse. Let's talk to the patient rep. What has the social worker done for you? I start piling up a whole lot of concrete things for him or her to think about--or for the family to think about. It gets them off the issue of "I've got this thing that I might die from."

MIKE: And what would you say to someone who thinks they might have AIDS or ARC?

BOB: Get on with life. As fast as possible. If you have to be in therapy, or go to a support group, or whatever you have to do with this illness, get over it. Because there's a potential to be part of the group that makes it.

RICHARD: I don't mean to harp on it, but since nobody else has talked much about it, I want to emphasize safe sex. If you're able to stay in control, to figure out ways to deal with your sexuality and walk away from it feeling free from risk, which a lot of people may not be capable of doing, then I happen to think that's wonderfully therapeutic.

MIKE: Well, what I would say to someone who has AIDS is that I firmly believe--for obvious reasons--that survival is possible. Survival meaning life beyond what someone may have told you is possible--be that 2 months or 20 years. I'd emphasize that nobody's got the answer--there is no single answer. And there are no guarantees. Just don't buy into the inevitability of death from AIDS.

At the same time, like Bob says, you have to balance the possibility of survival with the very real possibility of death. I'm not encouraging denial. But I am talking about not bringing about a self-fulfilling prophecy. It's a very difficult course to negotiate--to not bring death on by willing it or seeing it at necessarily inevitable, but not denying that it's a real possibility and do what you have to do.

Certainly make a will. Make peace with people. Look at it this way: if you're gonna die, you wanna make peace with people. And if you're gonna live, having made peace with people will help the quality of life that you live.

I've made it one of my life goals to get out the word that I believe that survival is possible--difficult, but possible.

And just to echo what most of you said, we all like to be in control. We're all control queens. And AIDS threatens that. You feel out of control, that there's some "thing" out there, or something in you over which you have no control. And, of course, in life we never have complete control. But there are ways to be more in control and that's basically what your task is. Ask a million questions. Don't lay back and say, "Well, whatever the doctor wants to give me, whatever the doctors want to do, that's what I'll do." Ask for a description of treatment options. Not taking any chemotherapy at all is always an option. If you're in pain, ask for pain medication. Demand it. Or have a Reiki session. Or meditate or...just don't passively accept what someone tells you or think that some unpleasant situation can't be made more pleasant.

Basically, the advice I give to someone with AIDS or ARC is the a slight update on the advice that their grandmothers probably gave them as children: get plenty of sleep. Eat right. Don't wallow in pig pens like the Mineshaft or the St. Marks Baths or places where you're going to be exposing yourselves to all sorts of sexually transmitted infections.

Surround yourself with people who care about you and who you care about. Go for quality of life. Nobody's handin' out guarantees about length of life. You really don't have much control over longevity, but you have a great deal of control over quality.


REFLECTIONS ON HEALING,
HONESTY AND PERSONAL POWER

by Steven James


Unfortunately, as we all know, no consensus exists on the possibility of being totally healed of AIDS, so anyone who presumes to do so comes up against a thick wall of opinions and beliefs difficult to penetrate even for those whose very lives are at stake. I myself am attempting to do what few would deem possible, and regard the undertaking as a tremendous challenge, a journey through uncharted territory, as it were.

To declare success as inevitable would be foolish and dishonest, since the evidence thus far does not support that viewpoint. There are encouraging signs of progress, however, in my high energy level and other positive changes I've noted. My sense is that I am engaged in a process of healing, the outcome of which remains uncertain. I might die of AIDS, as my doctor once asserted I would, and there's a chance that I won't. In other words, I don't believe it is foreordained that I should either "beat" it or die of it, despite discouraging statistics and the signs of improving health I've observed in myself.

In my association with fellow PWAs, I encounter many like myself who are pursuing holistic as well as medical approaches, with the hope of promoting better health, prolonged life, and ideally of achieving a complete remission or "cure." As I listen to what they say, though, I am often struck by what I perceive as a discrepancy between the words they utter and the emotional quality and beliefs which appear to underlie the words.

One fellow who comes to mind stated forcefully, "If I don't lick this disease, nobody can! I'm doing everything!" He proceeded to list all the workshops and techniques he was involved in, from acupuncture to Louise Hay to nutritional guidance. I've got a long list myself. But what struck me as he made his statement were qualities of anxiety, compulsiveness, anger, and tension which to me spoke louder than the words and, I believe, contradicted them.

If healing is to occur, is it no more likely to do so through an attitude of calm yet powerful trust than out of a frantic pursuit of one thing after another? And yet, of course, it is understandable that fear would be the major motivating factor when confronted by an illness presumed to be fatal.

Another fellow I recall said to me, "I don't think I'm going to die of this disease." I must have looked at him a bit skeptically. "I really don't, he reiterated. But I couldn't hear the conviction in his words. Something in me said, frankly, he was bullshitting, trying to make himself feel better by pretending to have a more hopeful outlook than he in fact did.

So how was I to respond? I would not want to undercut a positive intention. If someone with a serious illness expresses despair, friends automatically offer reassurance and encouragement ("Don't give up. I know you can do it.") out of loving concern mixed with discomfort at the prospect of their death. Similarly, we invariably applaud expressions of determination and hope by those faced with serious illness. ("Great! Go for it!")

But I wonder if we are truly serving another person when we agree with an assertion which does not, somehow, ring true--meaning that the words do not appear to reflect an inner alignment, or agreement, between those words and the underlying thoughts (conscious and unconscious) and emotions. We don't need to play therapist or guru in such a situation, yet we might want to encourage our friend to take the steps to turn the wish into a viable goal, and the goal into a reality.

If I assert, "I'm going to heal myself," the statement points to a positive goal. But if my subconscious is simultaneously saying, "No, you're going to die," my belief is that it is impossible to recover from this disease, and my emotions are in a state of extreme agitation, depression, fear, or anger--well, then, the statement has little going for it other than expressing a nice wish which might have a tranquillizing effect.

Personally, I think there is more strength and purpose in saying, "I am working to heal myself. I don't know yet what the final outcome will be, but I'm sure going to do my best." The second statement has more truth to it, more direction, and therefore more power.

Personal power is probably the key factor in healing, and to me having personal power means developing the singleness and strength of purpose, of vision, and of will to transcend circumstances which, outwardly, might seem overwhelming. It requires not only an assertion of faith, but hard work and perseverance.

Integrity, vision, a loving attitude, and getting the job done regardless all serve to build personal power. Not being entirely truthful is one way to undermine personal power, since somewhere inside of us, we know the truth and, by not acknowledging what is true for us, we set up internal conflict. Any kind of conflict or split within necessarily detracts from personal power, just as any kind of criticism or negative emotion towards ourselves (or anyone else) tends to undermine personal power.

As humans, of course, we can say one thing, think another, feel something else, and act altogether differently. As complex beings, we have a unique capacity for contradiction, conflict, and inconsistency. We also have many thoughts and feelings of which we may be unconscious, so the task of achieving total agreement and alignment may be impossible. But it is possible, and I believe critical, to strive to release the crippling fears, distorted images, and limiting patterns which so often undermine our exalted and positive goals--to face them, to admit to them, even if we cannot exorcise them completely.

It is sad to witness the demoralizing and debilitating effects of fear and illness on those we love, yet we also see how learning to live with fear and the nearness of death can have such a strengthening, uplifting effect on some individuals.

I don't have any quick or easy solutions, no formulas for success, yet I believe that our response to any situation, our "attitude," is more important than the circumstances if only because we can exercise choice in that area--and by doing so, consciously and to a positive end, we can build personal power and thereby exert a health influence over the course of events.

I totally support and applaud anyone's belief in the possibility of surviving AIDS. Even if it were a one in a million shot, why not be that one--or be number two? Even if there were not statistics, why not create some new ones? But words by themselves are empty and ineffectual.

So my advice is to utter the words which are true for you, to express what you want to become true, and then do whatever you can to line up internal support, making note of contradictory thoughts, feelings, and beliefs, and take whatever actions are necessary to bring your vision into actuality. All of the above requires work, whether it be through the assistance of others (therapists, friends, doctors, teachers), through some internal, soul-searching or meditative process, or through the exercise of will and determination in setting goals and achieving them.

And it will also require time. Blaming other people, feeling powerless, and wallowing in self-pity are the antithesis to what I'm talking about, and are a sure downhill path--so why no go for something less predictable and more outrageous, such as health and happiness!


STEVEN JAMES' TOTALLY SUBJECTIVE,
NON-SCIENTIFIC GUIDE TO
ILLNESS AND HEALTH: TEN STEP PROGRAMS

by Steven James

I. HOW TO GET SICK

1. Don't pay attention to your body. Eat plenty of junk food, drink too much, take drugs, have lots of unsafe sex with lots of different partners--and, above all, feel guilty about it. If you are over-stressed and tired, ignore it and keep pushing yourself.

2. Cultivate the experience of your life as meaningless and of little value.

3. Do the things you don't like, and avoid doing what you really want. Follow everyone else's opinion and advice, while seeing yourself as miserable and "stuck."

4. Be resentful and hyper-critical, especially towards yourself.

5. Fill your mind with dreadful pictures, and then obsess over them. Worry most, if not all, of the time.

6. Avoid deep, lasting, intimate relationships.

7. Blame other people for all your problems.

8. Do not express your feelings and views openly and honestly. Other people wouldn't appreciate it. If at all possible, do not even know what your feelings are.

9. Shun anything that resembles a sense of humor. Life is no laughing matter!

10. Avoid making any changes which would bring you greater satisfaction and joy.

II. HOW TO GET SICKER (IF YOU'RE ALREADY SICK)

1. Think about all the awful things that could happen to you. Dwell upon negative, fearful images.

2. Be depressed, self-pitying, envious, and angry. Blame everyone and everything for your illness.

3. Read articles, books, and newspapers, watch TV programs, and listen to people who reinforce the viewpoint that there is NO HOPE. You are powerless to influence your fate.

4. Cut yourself off from other people. Regard yourself as a pariah. Lock yourself up in your room and contemplate death.

5. Hate yourself for having destroyed your life. Blame yourself mercilessly and incessantly.

6. Go to see lots of different doctors. Run from one to another, spend half your time in waiting rooms, get lots of conflicting opinions and lots of experimental drugs, starting one program after another without sticking to any.

7. Quit your job, stop work on any projects, give up all activities that bring you a sense of purpose and fun. See your life as essentially pointless, and at an end.

8. Complain about your symptoms, and if you associate with anyone, do so exclusively with other people who are unhappy and embittered. Reinforce each other's feelings of hopelessness.

9. Don't take care of yourself. What's the use? Try to get other people to do it for you, and then resent them for not doing a good job.

10. Think how awful life is, and how you might as well be dead. But make sure you are absolutely terrified of death, just to increase the pain.

III. HOW TO STAY WELL
(OR GET BETTER, IF YOU'RE NOT SO WELL TO BEGIN WITH)


1. Do things that bring you a sense of fulfillment, joy, and purpose, that validate your worth. See your life as your own creation, and strive to make it a positive one.

2. Pay close and loving attention to yourself, tuning in to your needs on all levels. Take care of yourself, nourishing, supporting, and encouraging yourself.

3. Release all negative emotions--resentment, envy, fear, sadness, anger. Express your feelings appropriately; don't hold onto them. Forgive yourself.

4. Hold positive images and goals in your mind, pictures of what you truly want in your life. When fearful images arise, re-focus on images that evoke feelings of peace and joy.

5. Love yourself, and love everyone else. Make loving the purpose and primary expression in your life.

6. Create fun, loving, honest relationships, allowing for the expression and fulfillment of needs for intimacy and security. Try to heal any wounds in past relationships, as with old lovers, and mother and father.

7. Make a positive contribution to your community, through some form of work or service that you value and enjoy.

8. Make a commitment to health and well-being, and develop a belief in the possibility of total health. Develop your own healing program, drawing on the support and advice of experts without becoming enslaved to them.

9. Accept yourself and everything in your life as an opportunity for growth and learning. Be grateful. When you fuck up, forgive yourself, learn what you can from the experience, and then move on.

10. Keep a sense of humor.


REMARKS OF MICHAEL CALLEN
American Public Health Association

Annual Meeting
Las Vegas, Nevada
1986

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 newsstand 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, skittered 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 tortuously 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 Roladexes--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 someone 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 every AIDS article--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 specific infections. I 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--in a word, happier--than at any time prior to my diagnosis.

* * *

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; chlamydia; 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 (no pun intended) 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 gathered 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 so far as my doctors and I can determine, 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 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 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 too vague. 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 every time 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.


BACK to
Table of Contents
SURVIVING AND THRIVING WITH AIDS:
Hints for the Newly Diagnosed
 Michael Callen, Editor
Visit
Michael Callen's
posthumous
Homo Pages
FORWARD to
next section
BACK to
PWAC Archives

Published in 1987 by the People With AIDS Coalition, New York City