There was a time ...

The 25th Anniversary of the HIV pandemic has brought back a lot of memories. While almost all of them are somehow painful, they still represent a historic chronology of people who demonstrated the power of the human spirit, in dealing with a disease that was essentially unknown, had no treatment and generally resulted in the demise of almost all who contracted it. As I reflect on the past, I feel it important to share some of my recollections, so that newcomers can learn our history and to insure that we will never forget.

In the early 1980’s, or the beginning, there was nothing more than death and carnage as HIV infection cut a wide swath through the gay communities. Something was killing our friends and we were powerless to stop it. However, there are people, who displayed incredible courage then, in those early worst years of the AIDS crisis. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on.

But make no mistake; there are heroes among us right now.

There are remarkable people among us, who showed astonishing courage and leadership, who summoned those forces and survived. They refused to be ignored and went so far as to stage "die-ins" to shame our government into action. They lobbied for treatment and services, got accelerated approval for anti-HIV drugs and formed the first AIDS Service Organizations. A time when countless people stepped forward, who were able to incorporate our needs, into direct actions to provide what our community needed most.

There are those who would don the required gown, mask and gloves to feed AIDS patients, housed in negative-pressure rooms. The food tray was left outside the door, because even the staff avoided entering the room unless absolutely necessary. There were those who held dozens of hands, as their friends shed their earthly bonds. Some of them buried their lovers, often helping to hasten their demise, by hoarding pills for overdosing or through whatever means were available.

There were AIDS buddies to help those in their final days. Food banks, clothes closets, delivered-meals and support groups. There were the problems of keeping an ASO board of directors full, when members kept dying each month. We cared for each other, attempting in our own feeble way, to somehow stem the deaths and loss of our friends. It was a time when often the only world that felt safe, was when you were surrounded by other poz people, and for many, they were also your only friends and family.

A time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. Or the instructions on what should be included in your panel for the AIDS Quilt. A time when each ring of your phone, sent chills up your spine. When attending support groups were always a challenge, because you would see who did not survive from the previous week.

A time when people shot themselves, overdosed and jumped off bridges when they got their test results. When memorial services, honoring multiple friends would be required, because there were not enough churches in which to honor the dead. Many churches flatly refused to allow memorials for AIDS patients. A time when, most funeral homes would not even consider accepting an AIDS patient for a memorial and burial; they didn’t want to risk becoming “contaminated.” A horrible time, not only in terms of human costs, but when we were reduced to begging to get help to bury our fallen comrades.

There was profound, shocking sadness here, amongst us all, but the years went by and HIV medicine got better, people stopped dying in droves and we found other lives to lead. Our sadness somehow seems a distant, dark dream.

Some of us who have “dodged the bullet” are beginning to reshape our lives. For once many of us we can finally make plans for the future. But there was a time when I knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. A time when our hospital buddy list, would change twice daily and we ran out of room, on our newly acquired plague honoring our dead, because the spaces for 300 names were filled in a matter of months.

Brian tested positive in the early 1980s, shortly before I did. Yet only a few months after the devastating news, he agreed to facilitate an HIV support group. We regularly saw men join the group, get sick and die, often within months. All we could do is try to calm their fears, meet their needs and insure that they would not die alone.

Watching them disintegrate felt like previews of coming attractions. But Brian was remarkable, a reassuring presence to everyone, and worked with the group for a couple of years, despite the emotional toll and the high body count. We found courage and fortitude that we did not know we possessed and compassion to ease our suffering.

It was a time that no one could prepare you for, because you can’t train to combat a pandemic. Nobody warned us of the emotional toll the carnage would demand or how to bury your friends, for years on end. Or how to deal with a world and country that refused to see and respond to this horrific plague: yet somehow we did, we persevered, we survived and are left to share the history.

Through this journey I have learned a couple of things about myself. The first being: My most courageous self, the best man that I’ll ever be, lived two decades ago during the first years of a horrific plague. He worked like a man possessed, alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone around him.

The second truth is that my experience has given me a glimpse into the full potential that we all possess to become more than we are. I have a better understanding of the horror of the Holocaust and plagues of the past, where you were forced to just stand there, powerless to act, as something took from you all that you loved, while secretly praying that your number would never be called. Somehow, even through the heartache, your instincts engaged, you survived and you moved on.

I suppose saying that I miss that brutal first decade would seem strange, but it would be partially true. I miss my friends terribly. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, and when I learned to offer help to those facing what terrified me the most. When I learned to reach beyond myself to help others and when I determined just how powerful my reach could be.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps even mundane. We’re tired and just wanting to return to a quieter time. We have new lives in a world that is still choking on HIV, but fortunately we are no longer powerless to counter this pandemic. We’ve adapted, survived and prepared to meet the next 25 years.

But there was a time... when we were heroes.