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 The medical information herein is severely outdated!

INTRODUCTION

You hold in your hands the legacy of many who have come before you. It represents the collected wisdom of almost six years of struggle against a deadly, stubborn enemy: AIDS. A majority of the contributors to this guide for the newly diagnosed are PWAs or PWArcs. They speak with immediacy and directness about their own experiences. At last, you can hear about the experience of AIDS directly from PWAs and PWArcs themselves.

About half of the articles in this guide have been published previously in the PWA Coalition Newsline; the other half are published here for the first time.

As one of the lucky ones- as someone who has survived more than 4 years after my diagnosis- I have felt the need to pass along what I have learned from my own experiences and to keep alive the wisdom developed by the many "generations" of People with AIDS I have known. The brave and singular men to whom this guide is dedicated each played a unique and selfless role in proposing, developing, living and promoting the concept of PWA self-empowerment.

AIDS need not be viewed as a death sentence. There is life after diagnosis. We must fight to retain as much control over our lives as possible. These are the overarching principles which resonate throughout the essays collected from a diverse group of authors. Many of the authors of this collection are living those beliefs today. Others died proving the truth of these premises.

Although I am not Jewish (though I aspire...), I share the Jewish belief that knowledge of one's history is crucial- that it can and should inform how we live today. Many of the lessons learned by the authors of this collection were written down with the hope that those who came after would not have to reinvent the wheel- suffer the same hardships- wade through the same uncharted waters. As editor, I hope that they will be of help to those newly diagnosed with AIDS.

I think it is important that you understand the history of how this guide came about.

In Denver, in 1983, an amazing group of People with AIDS (PWAs) and People with ARC (PWArcs) came together at the 2nd National AIDS Forum sponsored by the National Gay and Lesbian Health Education Foundation. (Of course, the acronyms "PWA" and "PWArc" did not then exist. We were still called "patients" or "victims.") Primarily shaped by active and vocal contingents from New York and San Francisco (two of the three AIDS epicenters), the movement for PWA self-empowerment was born. The "Denver Principles" (which are reprinted on pages 128-129) are still the touchstone against which the PWA movement measures itself.

Those of us who were there brought back from Denver a radicalism and a passion which was immediately channeled into the formation of the first People With AIDS (New York). Tom Nasrallah, Artie Felson, Phil Lanzaratta, Bob Cecchi, Bill Burke, Matthew Sarner, Peter Nalbandian, John Berndt, Richard Berkowitz, myself and several others attempted to organize PWAs here in New York. We accomplished a great deal (the first safer sex posters ever to go up in a bathhouse in New York were written and paid for by People with AIDS--New York), but for a variety of complicated reasons, we eventually disbanded.

However, it soon became clear that in a city with so many cases of AIDS, there needed to be an organization run by and for PWAs and PWArcs. Out of the ashes of the original People With AIDS rose what became the People with AIDS Coalition--a name chosen to distinguish it from its controversial predecessor. Although a few of the founding members of PWAC had been members of the original People With AIDS (New York), the majority of Coalition members were of a new generation. Sam Alford, David Summers, David Garfield, Bob Herman, Ken Meeks, Jack Steinhebel, Max Navarre, Michael Hirsch, Jane Rosett, Al Graham, Griffin Gold, Thor Wood, Michael Calvert, Steven James, Joseph Foulon, Al Isaacs, Rod Seneca, Wolf Agress, Paul Lande, Mark Turgi, Bruce Zachar, myself and intermittent others began producing the first newspaper on the East Coast written by, for and about People with AIDS and AIDS Related Conditions (with a lot of help from our friends). Our first 3 issues were photocopied on the sly after hours unbeknownst to corporate America. The Newsline and the PWA Coalition which produces it have now become an important part of the fight against AIDS here in New York City.

So how, you ask, did this particular guide come about?

I remember one of the first meetings the Board of Directors of the PWA Coalition had in its amazingly beautiful new space (generously rented to us at the 11th hour by St. John's Episcopal Church in the Village). I can see it like it was yesterday. Twenty or so PWAs and PWArcs, several queers of questionable health and one feisty lesbian crowded into an 8 by 8 living room sipping herbal tea and munching Saltines. In my obsessively democratic style, I made everyone go "round robin" and contribute to a wish list. "What," I asked, "in our wildest fantasies, would we like to see the Coalition do?"

One of the projects consistently named was a "Hints for the Newly Diagnosed." Frankly, there was a bit of self interest involved. Most of us were or had been in support groups and complained that just as a support group was getting good, some newly diagnosed person would enter, desperate for what we called "AIDS 101" information. The person was usually in such crisis that the group had to stop to explain a whole bunch of terms and concepts and before you knew it, the two hours were up and you hadn't had time to get to your own problems.

The projects enumerated at that "wish session" represented the diversity of personalities in that room. Each seemed more important than the previous suggestion. I can see Sam Alford, bent double from recent exploratory surgery, hugging a pillow, loudly putting his two cents in whenever someone said something he didn't agree with. Perhaps more than most, Sam wanted this guide to be written.

That was almost a year and a half ago. It has taken so long to become a reality for obvious reasons: the almost monthly deaths of founding members, the interruptions due to illness and hospitalizations, the need to extinguish whatever the latest AIDS political brush fire there was, and the sheer magnitude of the task.

I want to acknowledge up front that there are many issues which this guide does not address adequately. For example, in New York City more than half the cases are among people of color; for a variety of complicated reasons, the essays written by or which deal with the experience of Blacks and Hispanics who have AIDS are seriously underrepresented here. Also, the heterosexual experience of AIDS is only cursorily discussed. Women are underrepresented. The experience of having AIDS-Related Complex (ARC) is only glancingly dealt with. (There are plans for a separate guide for PWArcs.)

Efforts have been made and are currently being made to increase the involvement of minorities in the governance of the Coalition and in its outreach. But I felt I could not wait any longer to publish this; I have gone with what I had and hope that the next edition of this guide can correct some of the current edition's deficiencies.

It's a touchy subject, but I may as well grab the bull by the horns. At the present time, the People with AIDS "Coalition" could more appropriately be called "Gay Men With AIDS." I hasten to add that that is not something I am at all embarrassed about. Gay men are a minority too; we have suffered and continue to suffer discrimination at the hands of homophobes everywhere. I am proud to be a gay man and proud of what the gay community has been able to accomplish politically. And I am amazed and proud of all the Coalition has been able to accomplish. I believe that the various so-called AIDS risk groups have more in common than not. It is my hope that the essential truths about dealing with AIDS contained in this guide will speak to all PWAs and PWArcs.

What I think is unique about the PWA Coalition--and this guide--is that it rings with the immediacy and impatience of those clearly confronting their own mortality. If some of the authors speak with urgency or perhaps stridency, it is because People with AIDS wake up every morning to face the very real possibility of our own deaths.

Time is short and life is precious and there's much to be done if we're to get on with this business of living.

I will end by imploring all you PWAs and PWArcs to write down your coping strategies. If the next edition of this "collected wisdom" is going to serve its stated purpose, it must have the up-to-the-minute contributions of the latest generation of PWAs and PWArcs. Please take a minute to write us and let us know what you think about this guide. Let us know what is happening in your life- what coping strategies you've discovered.

The task ahead of us - defeating AIDS - is formidable. It is hoped that this guide will provide some tentative signposts along the difficult path to victory.

--Michael Callen