The world has turned upside down. Thankfully, I am still sober. I know what I must do to maintain. Perfection is but an illusion. Imperfection is the truth. The answer is within as long as one can be quiet enough to hear it.
This week has not been easy at all. I don’t remember the last time someone said to me that they were sick, and were in a hospital, being diagnosed with a virulent strain of PCP Pneumonia. An opportunist infection, indicative of a sero-conversion event, that has resulted in a flat AIDS diagnosis. This did not happen just Once, it happened Twice.
A very good friend, and his equally familiar husband, have BOTH been diagnosed with AIDS over the past few months. Sadly, an email I did not receive months ago, came to me last night, and I learned of these two diagnoses.
My one friend, had his pneumonia and his doctor told him that he was very sick, and that she would no longer be his doctor. Thankfully a Nigerian doctor took over and began the arduous job of trying to keep my friend alive. Last night we also learned that he has Lymphoma. What type of Lymphoma will not be know till next week.
Sadly, Had I known this information months ago, when the email was first sent to me, we may have been able to avoid what is going on right now with him.
Another friend, is preparing to receive a very serious guest here in the city, and the planning of mental healthcare has begun for him.
Things had been stable for a while now, and it seemed, it was just prep for the shit hitting the fan this week, all at once, and all at the same time.
I’ve come to the point in my journey right now that I need to sit back and be quiet. I need to listen and I need to stop taking on people and situations that are just not good for me, for a myriad of reasons.
With that in mind, I have turned my attention to the Buddhist Boot Camp, and Timber Hawkeye. I need a little direction and some simple spiritual truths at the moment.
I can’t help anyone, if my bank is empty. I need to empty my vessel, so it can be filled. I need some serious sleep, because I have not been sleeping well at all. And I have been agitated beyond my comfort zone with people in the program, locally.
I am too agitated to sit in certain meetings right now, seeing I walked out of a meeting, prematurely on Sunday last. Something I don’t usually do, ever. Now I know, why I am agitated, and I know what to do to calm myself.
There is no perfect solution to sobriety. Because there are no perfect examples in my sphere of friends. I need to stick to certain routines and meetings and people.
We may loose some people … And I know this intimately.
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…
Over the next few weeks, the teaching would begin. The team rose to the call, one of the boys was sick and was left on the side of the road with nothing but what little dignity was left in his soul. All I needed would be provided come hell or high water. Wild Horses would never stop the charge for life. We were all sick, we were all dying. Save for two people in the entire organization. My champions would save me, if I wanted it or not. Death was not an option and I would either get it or I would die…
So it began…
At that time, the temple of sin was alive and things happened so quickly that if you blinked you would miss it. The temple was filled with every earthly delight, Dante would have been pleased with our Garden of Earthly desires, carnal, profane and truly sinful. I loved every minute of it.
The rule was set…
You have a life, outside the temple. When you come to work, you leave your baggage at the door, do not bring it in here. No exceptions. Come to work, and you will serve me your Master and do whatever you are told without question without complaint, is that clear!
I took that time of my life as sacred and profane, but that is another story. You can read about the Sacred and the Profane over there in Pages… This is another thread to a long running story of how this boy was made a man, a saved man, a profane man, and in the same vein Sacred. You never know where your lessons are going to come from, and you are grateful for the wisdom and time people took out of their lives to care for you and teach you lessons that nobody else was going to teach you. So pay attention Little One.
This is your life we are talking about…
The gobos are tracking across the floor slowly through smoke and mirrors as the music plays just for you. I learned very early on, in that space that music would identify particular moods, paint particular pictures. Farkle and I had a ritual. He IS the only one left from the fray of men who lived and died from the temple of sin. We began each shift in our own way, begging god another night, another day, another minute. I was surrounded with warriors fighting their own significant battles with AIDS. I was not hit by the KS demon. I was not plagued by things I saw and witnessed, thank the creator. It was ugly. It was brutal and it was most importantly the fight of the century for all of us. Many men went to their deaths in our arms. We bathed them, clothed them and in the end we buried them.
When I got sober there was a man with AIDS named Larry, he was a drunk like me. But he was unique. He sat with a bottle on the table and a loaded revolver to shoot himself. He carried that gun with him and showed it to every one of us, and he told us relentlessly that he was going to kill himself. He got sober with the rest of us. Over the years following his spiritual awakening, he did something that no one else thought to do.
People with AIDS were being left in the streets. Mortuaries would not process sick people, they would not touch a body that had been infected with AIDS. Families would not bury their children. We did that. Larry opened his services to the community and he became another champion of the cause. I knew him. He eventually got rid of the gun, so I heard.
For a few minutes during transition, I would warm up the smoker, fire up the turntable and start the computer so that I could worship my God to the music of my soul. I did that every night. I worshiped whatever was going to save me.
I was servant to the men. I was servant to my Master. I was a slave for God, be he dressed or undressed. You never saw God until you witnessed true beauty of the soul in all its carnality. There is something sacredly profane about this part of my life. What went on inside the temple stayed in the temple. Many months would pass and I battled my demons of alcoholism before I finally fell into the pit of death, and there happen to be somebody watching from the sidelines.
Danny saved me that night. He was the man who cradled me in his arms, oxygen mask on my face and had called the paramedics to try and revive me. Danny took me home that night, and did not leave my apartment for a week. He fed me, bathed me and cared for me, under that watchful eye of my Master Todd. When the word was spoke, action was taken, and hell hath no fury if you did not jump when told to. Todd was very protective over his boys and men.
We were reminded that Todd had lost love to AIDS. Bob was buried across the street in the cemetery that faced our building. It was hard – it was painful, and it was sacred. Kevin and Larry did things for me that no man ever did for me in the real world. We were the three musketeers. We were the team to beat in bar management and service. We ran a tight ship and we were accountable, respectable and reliable. We proved a mighty force against the odds we all faced.
Let’s get it on…
Shift was begun at eight. The wells were filled the beer was stocked and the ice bins were full. Put your money in the drawer and let’s get the music thumping. Like clockwork at the strike of eight bells the first note hit the turntables. They were lined up around the building. Cars were parked all over the place. The temple worship had begun. Heaven was found amid the souls of suffering men who knew they were all marked for death, but for tonight, whatever you desired was fulfilled. You could drown away your sorrow and dip into the well of living water if you wished as well. You have never lived until you party like your dying with crowds of undulating flesh as far as they eye can see. The ghosts of those men now inhabit the fantasies and dreams I have still to this day.
One by one, two by two, they died in our arms. We held them until they took their last breaths. Memorialized in the careful and blood soaked threads of quilts, as the years went by, they started collecting by the dozen, then by the hundreds. If you’ve ever seen the entire quilt unfurled, all the men who were part of my life in those first years of my epidemic life, they are all together in death, as they were in life. Memorialized until the end of time. And we remember each of their names.
So many young boys torn from life before they knew what hit them. Men who infected them had died as well. Many of my friends were taken on trips that were detrimental to them, and just robbed them of life that was still left to live.
Todd saw to it that I would never go there…
You come to work, dress as you will, you obey me and do not waver from my eye, for I know your carnal desires and you are too young to tempt the devil with his dance. Because I surely did not know what could befall me if the right charmer enticed me into his web of desire, and they all knew I was fair bait. But in order to dine from my buffet, you needed explicit permission of my Master, who never allowed any man to defile me like many had been. I was off limits. I never crossed the line provided because that meant disrespect and I could never bear to break my Master’s heart with disobedience.
I loved Him, and He loved me – I had many problems. I was depressed and angry and resentful. I had the scars of traumatic visions of my dead lovers corpse in my head, and the words of his mother still ring in my ear today “I hope that every night until you die, that you see the corpse of my dead son in your field of vision.” That curse still lives with me and will go with me to the grave. Five day old corpses are not pretty. I had to identify the remains when all was said and done. Save that he was wearing jewelry that I could identify and part of him was still recognizable – God forgive me…
I remember that day, it was early afternoon the morgue called me from work to come and do the deed. I drove in and looked upon him in that room, I wept tears that burned into my soul forever. I just could not imagine – the pain was so hard to bear. I drove over to the bar. Bill was working behind the bar. I drank until I could not stand up on my own. I drank for a week, straight…
Todd and Bill needed to find me a solution and quick, because I was on the outs.
I started suicide therapy in a group setting that lasted 32 weeks. Nothing like rehashing death week after week, until the pain was purged from your soul, but is it ever? Months went by until I got my news.
But they cared for me in all my brokenness. A young angel would earn his wings back. Come hell or high water. In the end, when all was said and done, at the end of the day I survived, but so many did not. And each night I offer them prayers in hope that when I meet my death that all of them will be waiting for me in the Temple Of Earthly Desire in the promised land of the Kingdom of God, where the sacred and profane are mingled with the blood of the Almighty and the blood of my friends who have gone before me, on that day we will be cleansed of our sins.
And forgiven by God…
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.
Sometimes TRY is what we have to do to survive. And not some simple try, but a gut wrenching, painful, walk through hell, TRY.
Try becomes something entirely different when faced with certain INCURABLE death.
Nobody except those of us who have had to TRY, understand this kind of effort, and what kind of mental and emotional energy we are putting forth to survive.
First World people don’t really know what TRY really means until they are standing on the firing line faced with their own mortality.
We are taught in the First World, as we grow up, that we must get an education, and graduate at the top of our classes, get a job, make a home, find a wife and pop out a few kids along the way.
This is not a TRY proposition. It is a societal YOU MUST DO THIS proposition. The notion of TRY is not even present. It is something we must do, as taught to us by our parents and society around us.
This is a DO proposition. And NOT a YODA “There is no TRY only DO” action.
An old-timer quoted YODA in the meeting tonight.
For those of us who grew up in the Star Wars years, we all know this character and his teachings. There are many who incorporated Star Wars into our lives, in one way or another.
Growing up in the home I grew up in, I was constantly TRYING to do the right thing, living with parents who called me a mistake and continually reminded me that I should never have been born. They still believe this, TO THIS DAY.
Imagine that kind of stress, when you are trying to grow up like your friends.
I tried. I did the best I could do, until the time came for me to go out into the world.
The man I listened to said; that in order to belong that I had to TRY his method of entry.
I had to TRY to walk into a bar, take a seat and have a couple of drinks. That if I tried this, it would guarantee me acceptance.
For years after, I kept TRYING and I kept FAILING.
Instead of acceptance, I ended up sunk in alcoholism.
The end game did come, this week, twenty-three years ago.
That last morning, sitting in a bar at 7 a.m. I tried one last time.
It might have been exciting for the few hours that TRY lasted, in the end, that action of TRY took me to the end game for which I ended up in.
I TRIED to fit in, to become one with all. That was a HUGE failure.
On the day that doctor said to me that “This is the end, kiss your ass goodbye, go home and prepare to die,” There was no more TRY for me.
This was the end.
It was good that I had a card up my sleeve, in hindsight.
I called Todd, and he came to me and said “NO you’re not gonna die, not on my watch.”
The very last TRY I attempted, I certainly TRIED to kill myself, because I was not going to die a miserable death like my friends. I was going to go out on my own terms.
Todd (read: GOD) had other plans.
He set me on a path of TRY that changed my life. And it saved my life.
Every night, as I walked into that bar, He asked me to TRY, just for that particular night, and every night after. He gave me the space to TRY, making mistakes all along the way. Every mistake ended up in a lesson about life.
Can you imagine what it felt like to know you were dying, watching your friends drop to their knees, drinking and drugging their way to their graves, and know what the end game looked like, but at the same time, you were floating just above the water, safe from that gut destruction, because someone who loved you asked you to just TRY.
You have no idea what that felt like. Nobody does, except those of us who survived that war of sickness and death.
First World humans who get life changing news from their doctors, face this same kind of threat. Some sickness can be cured. Some people do survive.
However, many do not.
A death sentence of sickness is the same across the board. But a sickness that has no drugs to cure it, nor doctors to treat it, and a system of healthcare that did not exist, even in the late 1990’s, is a totally different BEAST.
And First World humans were celebrating in the streets and in their churches, they were celebrating in huge numbers the fact that us FAGS were getting what we DESERVED.
That Hell was a real place, and we were on our ways there.
Imagine what that felt like.
I know what that felt like, because those words came out of my parents mouths.
Todd asked me to trust him and to just TRY.
I cannot begin to describe what that kind of TRY felt like. I can, but I know, my words fall on deaf ears, because First World Humans really don’t care about us.
I TRIED my way into survival. As long as Todd was there, monitoring my effort to TRY, it worked. But when he left, my TRY lost steam, because I did not know how to TRY on my own. I just did not know how to do it any more.
I went to meetings for a while, and I was trying to stay sober. I did as some asked of me, within the rooms. I was trying to build a home, and I did that.
On that night I was asked to TRY in a room, to share experience, strength and hope, with what I knew about Experience, Strength and Hope then, I did not know what that meant. Not like I know it today.
How do you try any longer, when sober men come to you and say that “We don’t condone your lifestyle and you need to go away and not come back,” How does one continue to try when people in the program turn you away and ask you to GO ???
Left to my own devices, I TRIED life on my own terms, on my OWN WILL, ALONE.
Cue the SLIP music.
In the last year of my drinking, Delusional as it was, I was right back in the mix of “In order to belong, you’re gonna have to drink your way in.”
You really cannot TRY in a black out.
When I got to my bitter end, the only thing I could do was to PRAY.
At least I was still alive to pray.
God listened to my prayers. He sent the answer to my prayer.
I had returned to healthy TRY once again.
I sure as shit could not trust myself to do anything right. ALONE.
One step at a time, one day at a time, I tried to stay sober. I listened to people talk. I listened to books being read to me, because I could not really read them myself.
Gifts from God began to come to me and I ended up moving to Montreal.
A New Life was on the horizon. For the first time in my life, with the right people in my life and the right advice, I tried every day.
Fifteen and a half years later, I am still TRYING.
The past year has been TRYING on me emotionally.
And I learned the hard way, what TRY really means to sober people who claim to be sober, yet walk away when the tough gets going.
Many people did NOT TRY to help me. They did not TRY at all.
My friends walked away, because their limited perceptions were, LIMITED.
I am not perfect, yet I TRY, every day.
I have one friend, here in Montreal, who challenges me quite forcefully. A week does not go by, without him giving me certain advice about my TRY.
My best friend, who lives in Ottawa, is the only friend I have who tries, every day, to be part of my life.
NONE of my other friends TRY like He does.
But, If I go to a meeting, there, they try. They don’t TRY very hard, outside of the room.
I talked to a good friend of mine tonight, that I had not seen in a while. I told him, how TRYING life has been on me, and that I was still his friend, and that he can rely on me.
He knows I am trying my best to be the best version of ME. Today …
I am still alive today because I believe in TRY.
TRY works. So if you are on the fence with something in your life:
All you got to do is Let Go, and Let God, and you gotta just TRY.
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.
I would eventually call Todd.
This is my life. This is my Pride. This is who I am.
Attending Pride last Summer in our nation’s Capitol, Ottawa, when all was said and done, I wondered why I even bothered to go in the first place.
I mean, Really !!! Black Lives Matter, Militant Black Lesbians, Feminist Preachers, sharing how white men have invaded their lives and made them worse, Trucks carrying Port-o-Potties, because Trans people cannot use their correct bathrooms … Every other marcher handing out condoms to the waiting crowds standing in the rain as they walked by.
NOT ONE MENTION of AIDS. NOT ONE MEMORIAL FLOAT. NOT ONE WORD.
It was like, we did not even register on the map. I did not register on the map either.
I stood there, dumbfounded at the stupidity and shallowness of the presentation rolling by me in the rain.
THIS, AIDS, IS my PRIDE.
A part of me that lives on today, when men like David Kirby and Peta went to their deaths, having no drugs, or even the possibility of survival.
These men are dead.
Hundreds of thousands of men, (and some children) are dead, because of how we were relegated to the edge of society. Ignored by governments, turned away by families and churches, turned away by friends, lovers and family.
If you want to know what I think of PRIDE, this is where we start. Before there were militant black lesbians, or Trans men and women, or bathroom issues to contend with, there was US. You are here, because WE were here, before you.
This is where PRIDE began. To get the world to notice US, dying all around you, because the world did not act in time, with what we really needed. And sent so many people to their deaths because of ignorance, stupidity, arrogance and hatred.
I will not march in a Pride parade or even attend again, because, WE have been Forgotten. Times have changed, yes, I concede. It is written that
“Those who forget the past are destined to repeat it.”
July – The Month that I revere with solemnity and honor. The month that I learned I was going to die, like all of my friends.
And as long as I live, the memory of my brothers will never go unforgotten.
**** **** ****
The Story Behind the Photo that Changed the World’s Perception and AIDS
In November 1990, a gaunt, dying man appeared in the pages of LIFE magazine.
That man, David Kirby, had already made a name for himself as an HIV/AIDS activist in the 1980s, and was in the final stages of the disease in March 1990, when journalism student Therese Frare began photographing Kirby’s own battle with the virus.
The following month, Frare captured Kirby on his deathbed surrounded by his family. He died soon after it was taken, and his family’s grief came through the haunting black-and-white still frame.
The photo took on a life of its own after being published, and the story surrounding it is as moving as the image itself.
David Kirby was born in 1957 and raised in a small town in Ohio. As a gay teenager in the 1970s, he found life in the Midwest difficult.
After finding out about his orientation, Kirby’s family reacted the way most did then: negatively. With his personal relationships strained and no obvious way forward for him, Kirby set off for the West Coast and settled into life in the (still partly underground) gay scene in Los Angeles. He fit in well there and soon became a gay activist.
In the 1970s and ’80s, homosexual behavior was still illegal in most states. Normal adult relationships for gays carried the risk of arrest and prosecution as sex offenders.
In California, in 1978, the so-called Briggs Initiative, for example, had sought to ban openly gay residents from working near children in a public school. Activists had been crucial in the initiative’s narrow defeat, and Kirby began attending rallies and protests to widen gay rights in the state and nationwide.
As activists tend to do, Kirby built up a network of contacts who would later help him raise awareness of the disease that was stalking his community.
Unfortunately for David Kirby, and for millions of others, the Los Angeles gay scene was an epicenter of the burgeoning HIV/AIDS epidemic. The first scientific description of what we now call AIDS was published as a series of case studies of Los Angeles residents who were treated at the UCLA Medical Center.
Kirby got to town just as the infection was taking off, but before anybody knew what was going on.
It was typical of gay men in “the scene” to have multiple partners in quick succession, and protection was almost never used. Combined with its long incubation period and slow, enigmatic onset, the disease was well-positioned to spread from person to person with impunity.
Nobody knows when Kirby was infected, but by the early 1980s, clusters of unusual cancers and respiratory illnesses were cropping up among gay men in every major city in America.
Kirby was diagnosed with AIDS in 1987, at the age of 29. Without effective treatments, or even a clear idea of how the virus was killing its victims, the diagnosis was a death sentence. It was known by then that the infected had from a few months to a couple of years after the onset of symptoms to live.
Kirby decided to spend the time he had left in AIDS activism. He also reached out to his family and asked to come home.
AIDS activism was desperately needed at the time.
Around the time that David Kirby was diagnosed, an elementary school student named Ryan White was expelled from his classes and barred from school property after a blood transfusion left him HIV-positive. The general lack of knowledge about AIDS had induced something close to panic in the public, and parents were afraid Ryan might have spread the disease to his fellow students.
There was also a prevailing idea that AIDS was a “bad-person” disease, given that its principal victims by that point had been gay men, drug users, and prostitutes.
Perhaps as a result of this stigma, research funding had been shamefully deficient in the early stages of the epidemic, and activists of the time worked to both dispel the myths and fears around HIV and to encourage more funding for research, as well as to fight absurd “public health” measures such as expelling children from school and, in at least one case (presented in all seriousness in a New York Times editorial by William F. Buckley), tattooing a warning onto the buttocks of known AIDS patients.
At the first hospital where Kirby stayed, one of the nurses wouldn’t even let him hold a menu for fear of contagion. Instead, she called out meal selections from the doorway.
In this atmosphere of fear and borderline superstition, Kirby and other AIDS activists talked, lectured, wrote, and appeared on television to reach as many people as they could to demystify the illness and encourage empathy for the people suffering from it.
By 1989, Kirby’s condition had worsened to the point that his family could no longer care for him at home. He checked into the Pater Noster AIDS Hospice in Columbus, Ohio.
One of the caregivers there was an HIV-positive transsexual man who went by the name Peta. The two became close friends, with Peta often visiting Kirby even on off days.
Kirby’s condition worsened through the winter and spring of 1990. That April, Peta started bringing a friend, a graduate journalism student Therese Frare, to visit. With the permission of Kirby and his family, Frare began documenting Kirby’s ordeal with her camera.
From the beginning, David Kirby gave his enthusiastic consent to the photos. As an activist, he correctly believed that an accurate photographic record of his death would humanize the burgeoning AIDS crisis and help people who’d never seen the disease to empathize with patients. His only condition was that Frare not personally profit from the photos.
Over the month or so that she visited the hospice, Frare shot several rolls of film, covering David’s rapid decline, his family’s grief, and the tender care he got from Peta.
On the evening of the photo that would soon become iconic, Frare and Peta were visiting other patients when word reached them that Kirby’s condition was heading downhill fast. His family had gathered to keep watch over him, and the end was expected within hours if not minutes.
Peta rushed into the room, briefly greeted the family, and began speaking to Kirby and holding his hand. According to her own later account, Frare respectfully stayed outside of the room until she was called in, then she took up a discreet spot in the corner and didn’t speak. She snapped a few photos, staying out of everybody’s way, until Kirby stopped breathing.
The last photo captured Kirby staring off into space as his father groans in anguish and his mother and sister cling to each other nearby.
Frare submitted the photos to LIFE, which ran the story in its November 1990 issue. It also won second place in that year’s World Press Photo competition for General News.
The image spread from national fame to international recognition in every country where AIDS had already taken a toll. In its 20th anniversary retrospective on the photo, TIME estimated that more than 1 billion people have seen David Kirby’s last photo.
The exposure was not all positive, however. Right away, Catholic groups, in a rare foray into functional aesthetics, complained about the composition of the photograph. The way Kirby’s father cradles his head, they argued, is blasphemously close to a very common motif in European Christian art called the Pieta, in which the grieving Virgin Mary cradles her dead son Jesus after his descent from the cross.
Other criticism came from gay and HIV/AIDS activist circles when a colorized version of the picture was used in Benetton’s 1992 “United Colors of Benetton” campaign. As it happened, the family had given the company permission to use the photo as a way of spreading the image to more people than would otherwise have seen it.
After David Kirby’s death, many of the people involved with the photo stayed in touch. Frare eventually moved to Seattle and found work as a freelance journalist. Peta, the half-Sioux, half-white, transgendered caretaker who had brought Frare into the hospice, continued working with dying AIDS patients until his own condition worsened in 1991.
Frare took several photos of Peta during his decline, and when he could no longer look after himself, the Kirby family took care of Peta — out of gratitude and love for how he had cared for their son. Peta died of AIDS-related illness in 1992.