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Memories of a Time Gone By: Day 5

Tom Hanks Philadelphia

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 washed 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 West 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.


World AIDS Day December 1, 2012 …

world-aids-day

Cue the music – start the fog machine – blue light GOBO slow pans across the floor through dimly lit space, and the first beat comes…

I am alone, it is early, the bar is not yet open, but I am there alone. Just me, the music and the spirit of God. Well, what little spirit of God there was at that time of my life. It is mid-summer in Ft. Lauderdale. I have just told Todd that I was going to die…

He wept…

This was one of the hardest days of my life. How do you tell someone you love, that you are going to die? The day I was diagnosed, July 8th, 1994 was the worst day of my life. Bar none …
My then boyfriend packed his things and left in the car as soon as he heard the news. All of my friends found out and they all took off for the hills. The only people still standing by me were Todd, Roy, and a choice few friends at the bar that I was working at.

I called a family meeting and that proved to be a failure. Because I was first gay, now I was HIV+ and that was doubly sinful and abhorrent to them.

If you were around during the height of the AIDS epidemic you would have seen employers fire sick people from their jobs, landlords throwing tenants out on the streets. You would have seen families, lovers and partners toss their sick significant others out into the street as well.

We had nothing left but the little dignity we had left. And the ones who stayed were the ones who would care for, tend to, care for and bury the rest. Because back in the 90’s, there were no comprehensive care systems. We did not have drugs that we have today. We did not have doctors dedicated to taking care of us.

The medical systems had to be built from the ground up. Many doctors didn’t know from AIDS and they had to learn how to care for so many sick people.

I bought several poster boards that I made calendars out of and stuck them on my kitchen wall to mark the days I had left to live. That was 540 days …

My friend Roy used to tear them up whenever he came over because he did not want me focusing on the day that I was supposed to die. I had bigger fish to fry. And Todd kept me on a short leash. What he did saved my life. There will never be another man in my life like Todd.

Hundreds of people I knew died. HUNDREDS !!!!

Every year the quilt was rolled out, we went to see it to mark the new names added to the list of the dead. And we also went to see who was still alive.

This is why we celebrate World AIDS Day, because those who do not learn from the past are destined to repeat it. This generation knows very little of what it was like for us – back in the day.

That is one reason I opened this blog. To catalog and collect my memories. So that in case I die, I was here. I left my mark on the world with the stories of my life that I have collected here for you all to read.

Gay is still a dirty word in the world. And is still met with condemnation and abhorrence. The face of HIV has changed over the last decade. New medications have come along, and many of us who are left from days gone by, are now on those powerful cocktails of drugs that we must take daily to stay alive.

I was there when it all started for me. When there were no real set drugs and I tested every drug that came off the pike from the doctors I sought out after my diagnosis.

In the beginning, we had a drug farm in Fort Lauderdale, and they would collect medication from people who had died. They would repackage those drugs and give them to us, as we could not get medication very easily. And I did that for two years. I moved to Miami because there were doctors there who were trained in care for HIV positive folks.

And from those doctors, I tested every drug that came down the pike. And this has been what I have done here in Montreal, since the day I arrived here. I have the best in medical care here and a doctor who is on the cutting edge of HIV medical treatment.

HIV is not a death sentence, unless you live in a country that cannot get medication. Where death rates are terribly high. We need to do more to get drugs to countries that so badly need them. Drug companies need to do more for the world than what they are doing today. They are NOT doing ENOUGH !!!

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Today we remember all those who have died.
We pray for their souls and their families.
And we ask you for your continued prayers and support.
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If you don’t know your HIV status, then I suggest you get tested. If you are an active gay man, it is your DUTY to know these things. The owness falls on you to get tested and be RESPONSIBLE for your life and also for the lives of men you have sex with.

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HIV knows no barrier, creed, color or sexual orientation. Straight people get HIV too.
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Nobody is immune from getting HIV if you are not careful or diligent about sex.  Doing nothing is stupid. There is no excuse for why you wouldn’t or shouldn’t get tested, it could SAVE YOUR LIFE  !!!
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Rapid treatment after diagnosis today can be very helpful to living a full and happy life. It didn’t use to be like this. In the 90’s HIV was a death sentence. Thank God I had what I had or I surely would not be here today writing to you.
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Be Responsible. Be Diligent and Be Smart. Get tested !!!

Take care of yourself and each other.

pedro quilt