Love And Death In The Time Of AIDS, NYC 1980's
photo: Thomas McGovern from the 1999 publication Bearing Witness (to AIDS), a ten year photography project on the AIDS crisis. This book is available from amazon.com and photoeye.com and signed copies are available directly from the author at www.thomasmcgovern.net
The dreariness of my working life came into sharp contrast with all the great things that were going on in my world in the early 80’s. The rough spots in my relationship with my children during their teen years had been smoothed and we were all doing well together again. The presence of Thomas in my life was the best thing that ever happened to me.
Still and all, even with all of that, going to work everyday to string pearls for an unappreciative, stingy employer was becoming more and more difficult. When I heard about a doctor who was working in the village near Washington Square who was looking for someone to manage his office I was immediately interested even though, or maybe because, I was told that he was working mainly with people with HIV/AIDS, the not very well understood but very scary new “gay plague or gay cancer or gay disease” as it was variously known.
I went to meet with Dr.X and learned that indeed, most of his patients were gay men who were showing symptoms of HIV infection. Little was known at the time and there weren’t many options for those who tested positive. It would be a difficult practice to be part of since an HIV diagnosis in those terrible early days amounted to a death sentence with little to be done about it. There was a lot of stigma attached to the disease and that affected everyone working among this population as well. Dr X warned about getting too personally involved with patients as this would only lead to heartbreak, as physical decline was a sure and difficult certainty. I have to admit that I was a little wary of “catching” the disease myself since the science had not yet convincingly defined how HIV was contracted and there were some wild rumors being circulated. Still I was intrigued and I knew that working with gay men would be a comfortable place for me. I couldn’t have asked for a better location than Washington Square and the best part was that this job entailed only a four-day workweek with Thursdays off. The hours on the working days were very long but having a weekday off was seductive and the pay that Dr.X, with whom I hit it off right away, was offering, was more than I had ever earned so it wasn’t a difficult decision to make. I was hired and gave notice at the pearl place the next day.
Gallery announcement card for the photography exhibition and book launch for Bearing Witness (to AIDS), at Art Resources Transfer, New York City, 1999.
I was really scared on the first days that I went to work for Dr. X and I was right to be apprehensive although I did not yet know what a complicated world I was entering. I was still too young to have known very many people who had died and none of my contemporaries were in danger of demise. I knew from my interview that the office was a mess and had been that way for some time so I understood that it would be up to me to get things going again, especially when it came to billing and collecting fees for which there had never been claims filed. When I got there, it was far worse than I could have imagined. Paperwork and billing were in total disarray after my predecessor had left several months before, and worse, there hadn’t ever been any system to contain the mess. While I was attempting to organize some of the mayhem, the phone never stopped ringing and patients were coming in non- stop. I had no way yet of assessing what constituted medical emergencies, urgencies or merely just questions that needed answering. Fortunately, I had Ross, the medical assistant at my side and he made me feel slightly better when he told me that in spite of all I did not know, I was already helping enormously and that he would continue to work with me as best he could. That was encouraging but Ross also was over-worked and always rushing to keep up. I never ever worked as hard and as non-stop as I did those first few months. Thomas started to make me a sandwich every day to take for lunch since I needed that hour when I turned the phones over to the answering machine to try to get some paper work done without interruptions. His lunches were so nice that I became the envy of my colleagues so he started making extra on order that I could share without going hungry. I soon learned the medical terminology I needed to call in scripts and file insurance claims, etc. I developed a system for tracking claims so I could collect some money and pay our office bills, also long neglected. From the patients themselves I learned about this scourge and from their families, lovers and caretakers I learned about the devastation that affected everyone who came into contact with AIDS.
Rosie with Dr. J at the office, photo by Thomas McGovern from Bearing Witness (to AIDS)
There were no limits to my duties in this time and place except for those that actually had to do with medical treatment. There were no precedents and consequently we waded in uncharted waters. The three of us, Dr X, Ross and I made it all up as we went along. GMHC (Gay Men’s Health Crisis) was newly formed and already a very important resource and other groups were just getting formed but there were very few places to go to for help just yet. Cabrini Medical Center, a Catholic hospital serving the area where Dr. X had admitting privileges, was one of the first to offer services to people with HIV disease and also provided the first hospice care that I know of so that is where our patients went for hospitalizations and end stage care. During this time, even funeral homes were reluctant to deal with our dead. Reardon’s on Fourteenth St. was the only one in lower Manhattan and gratefully we were able to refer families to a place where their dead would be respected and properly buried. We were developing a reputation as one of the few places for HIV infected people to go to be treated with respect and dignity. There were of course several other doctors who were also seeing people with HIV infections and they were in high demand too but there weren’t nearly enough to handle this growing epidemic. I started getting calls from people at the board of health asking if we could see indigent un-insured patients. Being in a high rent neighborhood, most of our patients came from rather affluent backgrounds with good insurance, so we could accommodate some, but in the end, in order to stay afloat ourselves we had to be careful as well. I struck a deal that we would see an uninsured patient for every one they sent our way who had insurance. The very and kind good Doctor X was fine with that as long as the bills got paid so he left it up to me. Some people at the telephone company came to know me as the nag who begged for phone service to be resumed on humanitarian grounds when bills were unpaid. I had no idea that could be done and I surprised myself by being successful at this most of the time. Who knew one could haggle with Ma Bell ?
photo: Thomas McGovern from Bearing Witness (to AIDS)
Unbelievably, several of my gay friends started to avoid me for reasons I couldn’t at first fathom. In the end, I understood that my very presence provoked all the anxiety and dread that this scourge engendered. I, as well was terrified, having had my days of unprotected sex too. We weren’t even testing much in those early days since there was nothing to do about a positive result, and there was no cure. It took at least a devastating week for results to come in, a really awful week. We were asking everyone to assume that everyone else was positive and to be sure to only have safe sex. That was the best we could hope for. In the end both Thomas and I were tested and gratefully, we were both negative. As for social services there weren’t many. GMHC of course had already begun to provide some much needed help and Act Up was just getting fired up, as was the wonderful “God’s Love, We Deliver”, and the People with AIDS Coalition (PWA Coalition) to name a few.
photo: Thomas McGovern from Bearing Witness (to AIDS)
God’s Love, We Deliver was true to its name. I have never seen such grace in charity as theirs. Each day they delivered elegantly served and nutritionally sound food to their clients. When their computer records revealed a birthday, birthday cake and flowers came with the meal and if the recipient wanted to celebrate with a friend or caretaker, extra dinners were gladly provided. That was true also for Christmas and Thanksgiving making it possible for a recipient to invite a friend to join them. Food was lovingly prepared, arranged and presented in order to make the patient feel more human and normal, less forlorn and isolated as their disease progressed. Volunteers with donated time and money did everything.
photo: Thomas McGovern from Bearing Witness (to AIDS)
Needless to say, I was bringing my work home and Thomas became my solace at the end of the day. Early on in my work with Dr. X, Thomas also had his “walk off his day job moment” when he had reached a point of no return, much as I had when I walked out of Ms. M’s establishment. Thomas had been working the desk at the old Algonquin Hotel, which sounds like a pretty interesting job, but it was as hard and demanding as all such work is, with lots of long hours. He would get called all the time to come in and work extra shifts, even to the point when one evening when we were there as guests with friends having drinks, he was approached and asked to work on the spot. Like many swell establishments, its public image didn’t do much for the people working there. In any case, he did what he had to do and in rather short order was able to find reception work at a major photo archive. In time he was able to demonstrate his printing ability and went to work in their darkroom, honing his technical skills even further. This day job at least was in his field.
The three images above are of AIDS activist and person with AIDS, Willie Sandoval from Bearing Witness (To AIDS) by Thomas McGovern
Soon Thomas was so drawn into my working life that he felt he needed to document what was going on. He had just heard that one of his gay college roommates had died of AIDS and with that news the die was cast. This of course was a delicate area since there was so much fear and outrage over this disease and our commitment to the privacy of our patients was foremost. There was however, Michael Angarola, (RIP), who was the first AIDS activist I ever met. When I asked him if he would allow Thomas to make a portrait and have an interview with him he gladly accepted and became the first of hundreds of people with AIDS that Thomas was to document over the next ten years. In exchange for the photo shoot and interview, Thomas always offered his subjects unlimited copies of his pictures and for many it would be the first, and last professional portrait they ever had taken and often those images became precious family treasures. Even after all this time, he still on occasion hears from some of those families
Michael Angarola, activist and person with AIDS
photo: Thomas McGovern from Bearing Witness (To AIDS)
Michael Angarola, AIDS activist with his mother and aunts who fully supported his work. photo: Rosycheeks
Now Thomas and I were both involved with this work and my colleagues became his too in a world grown both larger and smaller. Even in his darkroom at the archive Thomas brought in a photographer friend of my son John who was already working as a volunteer cook at Bailey House, a residential facility for people with AIDS. There was no separation among our friends and colleagues or our work or home. It was indeed a small and close community that was involved with the AIDS crisis in New York City in that time and most of us got to know of one another even if only by reputation. In time we did hire some additional help and Dr. J and another assistant joined our practice to keep up with the tsunami of patients we were trying to see. All of us who worked together started to bond in the way that families facing trying times tend to do. For better or sometimes worse, we chose to be together much of the time, taking vacations, partying, attending funerals and demonstrations, and of course working long hours together in a common cause.
Dr. J at Cabrini Medical Center making rounds. Photo: Thomas McGovern from Bearing Witness (to AIDS)
Seeing first hand the terrible consequences of not being lawfully married forced Thomas and I to consider taking that step. We saw entire estates contested by families who had all but forgotten their gay sons or worse yet, were more upset at finding out that their sons were gay than that they were dying, until the time of their deaths when suddenly overcome with greed, they fought tooth and nail to strip long time partners of what was rightfully theirs. The families always won and there was absolutely no legal recourse with which to contest these claims. At times lovers and caregivers were forbidden entry to hospital rooms or prevented from carrying out the final wishes of their partners by legal entities. Families who refused to enter those same hospital rooms for fear of being contaminated did not hesitate to enter into legal battles for profit, leaving partners and lovers not only bereft but often impoverished as well.
photo: Thomas McGovern from Bearing Witness (To AIDS )
On December 15, 1986 Thomas and I, with son John and his partner Elle as witnesses, were married at City Hall in Brooklyn a few blocks from our home. It was a Thursday and my day off.
Thomas and Rosie, C0-Op City, Bronx, New York