The Diagnosis of AIDS – Let’s revisit shall we
Here is the story of that week from my journal. If we are to start anywhere, here is the best place.
July 4th 1994
it was a nice day. Josh and I prepared the house for company; we were hosting a “friendly” BBQ in Ft. Lauderdale. Alan and his hubby and other friends from the complex were coming, a veritable who’s who of my social circle back then. It was a great day. We cooked and ate at the picnic table out back – the drag queens in the adjacent area were entertaining, and the conversation was light and campy. The day wore on into night, and fireworks were going to be shot off over Ft. Lauderdale beach. So we piled into the convertible and headed out for the five-minute drive across the bridge to the beach. Parking was a nightmare, but eventually we found a spot to sit in. I remember that things were happy and there were no worries; we were out celebrating the holiday. After the fireworks we came home and imbibed a great deal, and sat down to watch the new film out on video, “Philadelphia” with Tom Hanks. Little did I know how much life would…?
Imitate art that week?
I watched with a certain attention, as if saying to God, “I know what’s coming so please be gentle with me, because I am not sure I am ready to do this or die.” It had been a year since the first time I was tested at “Planned Parenthood” and that test came back negative.
The second test was done in a city hospital lab, and those results came back negative as well, but six months later we found out on the news that the lab had switched our (100 gay men’s) HIV tests with a retirement home lab list. It was freaky when 100 elderly folk got positive HIV tests back from the lab, OOOPS – someone made a HUGE mistake.
Anyway, that was that.
Around 8 o’clock I called my parents to wish them a Happy July 4th; there was another piece of information I needed to get across to them, and this was not going to be very easy, I had been feeling pretty sick since January, and checked 7 of the 9 symptoms off the list from “If these things are happening to you — you might have HIV” wallet card.
The conversation started light and airy, then all the air left my lungs and I could not breathe. And this is how it went
Pleasant conversation, then I dropped the bomb!
I have some news for you.
Yes, what would that be?
I’ve been feeling a lot sick lately and tomorrow I am going to see a doctor…
I could hear the wheels spinning in their heads. My mother had been working in Home Health Care for a number of years and she had seen what AIDS can do to a human being; couple that with what they were watching on TV and she was having worse case scenario visions in her head!!
They were watching “Philadelphia” at their house at the very moment I called. Suddenly my mother must have looked at the TV and she screamed. Yes, that’s right, I am sick, and I need to go get tested tomorrow, it’s time. My father was listening in on the extension, and I am sure he was beside himself; his fag son was sick and putting two and two together led to only one conclusion.
Josh was sitting in the living room while I had this conversation, he didn’t say a word. I had to prepare him for what was coming; Josh and I would never see the end of the week together. In the end, I would never see Josh again.
After a bout of hysterics, I told them that everything would be all right and I ended the phone call. That night I did not sleep at all, and Josh was all over the place. He was such a quiet and calm young man; we were both young then. We had only been dating for a couple of months by that point. Tomorrow’s test was just a formality; I knew already the answer I would get confirmed in a few days’ time. I did not tell any of my friends that night. Todd and Roy were in Provincetown on holiday. But I would eventually call Todd.
Tuesday July 5th, 1994
I got up this morning, with one item on my list of things to do today, and Josh did not sleep all night and was restless and upset. I got him up and ready for work and I drove him to work, and then proceeded to the clinic where my friend Ken was working.
It was in a little “medical mall” type building. The offices were on the second floor of the suites. I parked the car, put up the top and sat in silence and I prayed. “If there is a God up there, please, whatever happens, I am not ready to die.”
I find it peculiar that certain prayers at certain times remain locked in my memory on certain days of my life. I locked the car and walked the fifty feet across the parking lot and went into the office, where I was asked to take a seat and wait. Do you know what it feels like to be told “hurry up and wait?” I just wanted to get this show on the road.
You see, where I worked, at the nightclub, Ken, my friend, was the nurse for the masses. He worked off hours at the free clinic, he donated time to events, and he did home visits and took care of all of our friends who are now dead, at that time, so he had seen a lot of friends die in the five years we lived in Ft. Lauderdale. He was a very emotional man, who wore his heart on his sleeve and I knew that.
This was a hard week for him; any new diagnosis is hard when you are such close friends and part of a dynamic community where everyone knows each other intimately. We had seen each other over the weekend at the bar; I worked all weekend long. He knew that I was sick; because he was the one I went to when things got dicey. I think he knew as I did, but I think we both wanted things to be different. Alas, they weren’t.
Ken was preparing himself to do what he had to do and keep a straight face and be strong in front of me, you know, be positive about things, and keep up appearances so that I would not crack under the pressure.
It was time. Ken came and got me and escorted me to the lab, and he did not look me in the eye the entire time I sat there, tears falling from his face. It was quick, and painless. Afterwards he sent me off into my day. I signed the papers and went for the door; Ken was right behind me. He walked me to my car, and stopped and he sobbed in my arms. I was relatively calm. You see I was only 26 years old, and many of our friends had been gruesomely sick and died long drawn-out deaths. It was NOT pretty; many of my friends had KS, and cancer and some of my friends lost their minds and many of them died alone, because friends, lovers and family had thrown them out on the streets to die. Ken and I were people who cared for these people from the day they were diagnosed until the day they died. It was sad.
He said that he would call me in a few days and let me know when the tests come back…
And he tried to leave it at that.
I grabbed him and looked into his eyes and I told him,
“I know, and when you call I will know, just by the tone of your voice!”
He kissed me goodbye and I went on with my day.
I don’t remember what I did to pass the time until Josh got off work, but we tried to live normally and not get too upset over things. All I remember is that once the word went around that I had gone for the test, my friends started pulling away. It was the longest week of my life.
Friday July 8th 1994
the week passed by without incident. Thursday I waited impatiently for the phone to ring, and every time it did, I would jump through the roof. Alas, Thursday night I went to bed, knowing that tomorrow it would come.
I got up in the morning and drove Josh to work and returned to the house. It was around 11 am that the phone finally did ring. It was Ken. His voice was shaky on the phone, and all he said was “Jeremy, you need to come to the office, and you need to come now!” Then the line went dead. I got dressed and headed over to the clinic. I already knew the answer, but you never know, right? I parked the car, and said my prayers, and I rested for a moment.
I went up stairs and logged in at the reception desk. Ken was nowhere to be found. After a little while they escorted me into an examination room; it was blue in color, very sterile and cold. I sat down on the table and I waited. A few minutes later the doctor came in, file in hand. I guess he wanted to make sure I was prepared for this.
“Well, no better time than the present,” he said.
Let’s get this over with. “Jeremy, you have AIDS and that’s the bottom line. “
“You are going to die.”
The words rolled off his tongue with the flair and style of a practiced doctor. He sat with me for a few moments while I considered my fate. I think he was hoping that I would say something.
“Thank you for that information,” I replied.
He said that we would need to do a few tests to get started; those labs would show just how compromised my immune system was, and what the next course of action would be.
I did not know how bad things were, but I would soon find out. Back then, who knew from death or life? Drugs were hard to come by, and there surely was no system of treatment in place for me to go to.
He dismissed himself and said that when I was ready, I could leave.
So I gave him a five-minute lead on me, then I gathered up my soul and I walked out the exam room door and out to the car. I looked down from the second floor and Ken was sitting on the hood of my car, waiting for me. When I got down to my car, Ken stood up opened his arms and embraced me; he was sobbing. I stood there; I guess I was in shock. I stood there and held him, while the wave ran over both of us.
I guess I was not prepared to show my cards just yet. We talked for a little while and we set out a plan of action for the next week. I would return to this lab and get some baseline labs drawn to get a more total picture of my immune system and figure out how I was going to proceed. (That’s what eventually happened in the coming days.)
I drove home. I was relatively calm. It’s funny that I was totally prepared to stand up straight and tall and accept my fate, but watching my friends and coworkers and family crack up was very disturbing. People with AIDS were pariahs! You did not touch them, you did not hug them, and you surely did not want your neighbours or family members to know that you socialized with or employed someone who had AIDS, God forbid we infected someone you knew or even transmitted our disease to you by touch or breathing in the same space!
I got home, and I sat in my space and I tried to make some decisions. Who do I tell and when? I don’t remember what I did that day, but I kept myself busy. I called Todd and Roy, and they were on vacation. When Todd got the news, he was sad, and immediately he stepped up to the plate and became the man who would save my life.
That evening, Friday, I went to pick Josh up at work; I forgot to clear the tape deck in the car. The soundtrack to “Philadelphia” was still in there. It was around 5 o’clock when I picked him up; the sun was setting in front of us as we drove east towards the house. I tapped the tape into the deck, and it started to play…
I watched Josh convulse in the front seat, and throw up out the car door. He was hysterical. I did not have to say a word to him, but he knew. When we got home, he went into the bedroom, he packed his duffle bag, without a word, he looked at me, said goodbye, and walked out the door, got into his car, and drove away. That was the last time I saw him.
Whoa, OK, one down … two more to go.
I had some dinner and proceeded to call my parents. You would have thought that an atomic bomb had been dropped on my parents’ house. My mother, having worked in the health field, said to me that I had gotten what I deserved. She and my father had had a week to consider this topic. We discussed my plan of action, and I called a family meeting that would take place in a week’s time. I wanted everyone to be informed and I wanted to know that I was not alone.
That visit did take place. And it did no good to ensure anything but the disdain and ignorance by my family to step up and get involved in taking care of the future. I had made my choice, by doing what I had done, and I got what was coming to me. My father had made that perfectly clear.
I still do not know, to this day, if James was the contact point of HIV. All I do know is that James was a diabetic and was suicidal. That he was sick those last few months that we were together, and I did his blood tests with his pen. I handled the strips several times a day. And that they tell me was the transmission point. I did not know he had AIDS until well after his death, when a friend of mine called me at work one day back in ’93 to tell me he was sick and had AIDS. I guess it took me a few months to “seroconvert.” This is the process the body goes through when it’s finally hit with viral replication and inception of a virus that the immune system cannot fight alone.
Over the next week, I chose my battles wisely, I told my inner circle of friends. The ones on the inside of the AIDS circle (that I was part of at work.) On the other hand there was the other circle of my “social friends” that had partied with us just a few days earlier. They would never set foot in my house ever again, in fact, and it was as if I had walked off the face of the earth, because I never heard from many of them ever again. The stigma of AIDS back then was deadlier then the virus itself.
Todd eventually returned to Ft. Lauderdale. My landlord and his lover were notified.
Interesting that many years later, I was at a Pride Celebration in Ft. Lauderdale, and my landlord’s partner was in a wheelchair and sick with AIDS. When we were friends at the time of my diagnosis, they were a happy couple, with all the promise in the world. I had no idea. I did not lose my apartment, my rent was frozen where it was, and they helped me pay bills and buy food. Within days Todd had returned and he came over and we talked. (God, we spent a lot of time talking!)
I was in self-destruct mode. And the stress of being sick with AIDS took its toll. I drank around the clock, I drank at work, I drank after work, and all I wanted to do was die. Todd did what he could at the beginning to keep me on the straight and narrow. He outlawed drinking while on shift, (I was working in a nightclub then) so that kept me sober while I worked.
I would then head out after we closed to the “after hours” club called the “Copa.” It was down the street from where our club was, and they served alcohol till 6am. So I had at least two to three hours to get inebriated nightly. That lasted until the end of August.
One night, I decided that the pain was too intense that dying was a viable option, seeing that I knew what all of the men I knew went through. I was at the Copa one night, and it was hot and I had drunk myself into a very nice BUZZ. The problem here was, I wanted more, and I got more. That night, I collapsed on the dance floor in an alcoholic overdose of gargantuan proportions.
I woke up in my friend Danny’s arms. The ambulance was there and oxygen was administered. I was still alive. That was the last night I drank. That morning, Danny brought me home and he stayed in my house for a week. I could not go anywhere except work. Todd was worried that I was going to try and kill myself again. So I had babysitters when I was not at work. I hit my first meeting on August the 23rd, 1994. By that time, most of the bar staff was all sober, and three-quarters of us were sick with AIDS.
Todd had a safe rule in effect. We had jobs, and we got paid. If we got sick, and could not come to work, our shifts were covered by someone on staff. We did not get fired for being sick. The bar secured for us medical treatment through the local clinic, where one of our friends named Marie ran a community clinic/drug farm.
Ken came to my house weekly to check on me. My world got A LOT smaller.
Everyone outside my work circle walked away. It took me a long time to get over that. They were punishing me for getting sick. Like I needed any more punishment!
The religious fundamentals were making their cases for eternal damnation for gays and people with AIDS, and speaking out whenever we went in public. Funeral homes stopped giving services to people with AIDS and their families because of religious and social pressure.
Life was difficult, But, I survived, because of the community I lived in and the grace of Almighty God.
In retrospect, “it was the best of times, and it was the worst of times.” and if God gave me a choice to go back and repeat any area of my life over again, it would be that exact period of time, and I would not change one single thing.
For years after my diagnosis, my friends died left and right, 162 people. The Names Project Quilt is a reminder of all the lives I touched and was a part of, and all the men whom I knew and loved.
All the men who were CRUCIAL to my survival (our survival) all the gay men who collected money for People with Aids, the drag queens we loved and admired and partied with over the year, the diehard supporters, are all dead now.
So many boys, so many men, cut down in the prime of life. We were foolish then, and uneducated. It was only after the storm hit that the reality start to sink in. When our friends started dying and we realized that “something serious is going on” did the community got smart.
We built infrastructure. We created homes and safe spaces. We cared for those on the streets, we collected money and food. We cooked and fed people, we washed clothes and in some cases we even changed diapers.
A year later, in 1995, I moved back to Miami, after Todd and Roy moved out west to San Francisco. I did not go with them, I was too young, and I had been banking on the fact that my S.O.B father would die and I would take back my mother. Well, he is still alive, all these years later, and I did not get my mother back. Do I have regrets? Sometimes I do. I sometimes think, “what if?” but that’s all they are, thoughts. You know what they say about living in “what ifs right?” So I don’t think about what ifs anymore, just what will be.
From my diagnosis date through the first eight years of my life with HIV/AIDS, I lived in the United States, and I speak about navigating a U.S. program of medical, social and government system. I immigrated to Canada in April of 2002.