DEVELOPING AIDS AT THE MILLENIUM

About 13 years ago I tested positive for HIV.  For more than a decade I lived with the virus in a macabre relationship- wondering which one of us would end up winning our very intimate battle.  I found myself becoming more involved with advocacy on behalf of my community- in large part- to gain some sense of personal power over the virus.  I felt that if I could take my anger about HIV and use it as a springboard for positive change, it would benefit me and I might be able to make a difference for others as well.  As a person living with HIV in the late 80's and throughout most of the 90's, I felt very supported.  I don't mean by social service agencies and community based organizations, although there was plenty of support available through these resources.  I mean from the regular people in our community  the gay men living with HIV, the gay men that were not living with HIV and lesbians as well as our straight allies. The community was compassionate and nurturing.  I remember feeling a certain pride in the fact that our community had rallied and had come together to care for one another and to fight to raise awareness for sane policies and funding and prevention strategies.

In March 1999 I developed pneumocystis pneumonia and I saw a different community at the end of the millennium.  Suddenly, I seemed to be a pariah in my own gay middle aged middle class HIV positive community.  Gone was the community compassion, and gone was that sense of holding one another up to fight in our attempt to attain mutual dignity.  Only a few months after getting sick, I ran into a community activist who was HIV positive and who I had known casually over the course of several years.   When I told him about the change in my health, the response was "Oh, I didn't think anyone got pneumocystis anymore."    That statement summed up the feelings of many of my peers.

HIV has, since the advent of protease inhibitors, become some sort of perversely chic status- where the risk taking associated with barebacking and other less safe behaviors has become a tantalizing thrill for some. The illness associated with the virus is often being ignored and HIV is instead seen as a manageable lifestyle.  Often times men do not even bother to discuss HIV status before having sex.  Imagery in publications targeting gay men portray buffed men who are ostensibly living with HIV and who are climbing mountains- and in better health than ever. 

It continues to be taboo to question the responsibility of men who have sero-converted in recent years, even after more than a decade of education about safer behavior.  However the gay community believes that those people like me who have recently progressed to an AIDS diagnosis are somehow at fault for our decline in health.  It seems that middle class gay men like me want to believe that only drug users and homeless people still get those nasty opportunistic infections- not peers.  Of course, this ill-conceived notion should not make a difference in compassion or in prevention. 

It is ironic, that the community that I spent years working to help build through various means, is suddenly very uncomfortable with me.  I am a threat.  I buck the healthy HIV positive imagery.  I am not one of the people facing back to work issues; I recently faced retiring.  It seems that gay men cling desperately to the promises of protease inhibitors in order to recover that unfettered sense of sexual identity which so many of my middle aged peers miss and which so many of my younger friends never experienced.  I seemed to be a reminder that these treatments, while efficacious for many, are not a panacea.

My partner of over 12 years, who is HIV negative, looked for support groups for caregivers.  He called AIDS Health Project, Kaiser, and Shanti.  These groups don't exist anymore.  Why?  I guess because the community at large wants to believe that people like me- partners who are sick- do not exist. I recently corresponded with another friend who had been looking for a grief support group that would meet his needs, and he could not find anything available for him.

In no way do I criticize these organizations for disbanding groups supporting caregivers and those experiencing loss. In many ways institutionalized support for people with AIDS through organizations is more readily found than support from within the community at large. Although AIDS service organizations could take the lead in providing support for these overlooked members of our community, they are responding to the voiced community need.  However, it seems that no one in the gay middle class community wants to admit that there are caregivers and people experiencing recent grief among our peers.  Facing such a reality would call into question that tenuous sense of relief that the community has so carefully built around the near deification of protease inhibitors and the other medications now available.  

People still progress to AIDS and people still do die.  I know that gay men have come through a lot and that it is easy, with the first glimmer of hope, to want to forget these hard facts, but it is true.  This disease has battered our community and we want to get away from it.  We are tired.  Lately it seems that misdirected anger has some folks more interested in fighting the organizations that have been built to support us than to support the people in our community who need some compassion and care. 

Unless we face the fact that people still progress to AIDS from being HIV positive and that people still die from this disease, due to no fault of their own, we will be in deep trouble.  All the work that gay men have done to elevate our community by showing to the rest of the world that we are people of compassion, and all the education we that have done in order to avoid future infections, will disappear.  I hope that this deliberate ignorance is turned around and our community can recommit itself to compassion, enlightenment and dignity.