RTB is pleased to present a considered piece of writing from a long-term observer and participant in the AIDS war, who has written an explorative, insightful essay in two parts for ReduceTheBurden.
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I had a horrible nightmare when I was about 13 years old. I found myself in a large, darkly lit space, a room eerily filled with anxiety and dread. It had no windows and no doors, but for one: on a landing at the top of a single flight of about a dozen steps. There was something behind that door. Something powerful, something terrible.
I wasn’t sure…I walked up the stairs, shaking with fear, feeling horribly exposed and vulnerable. I had to open the door. I had to see what was there. I made my way to the top, and stood there, trembling, and reached for the door-knob. I would open that door. I would face whatever was waiting there…
Yet somehow after a huge effort, I just couldn’t do it. The uncertainty of what lay beyond that looming door was just too terrifying.
And then I awoke.
A Shooting Gallery and an Hour-Glass
One HIV Skeptics Continuing Journey
By William A.
In April 1984, U.S. Health and Human Services Secretary Margaret Heckler made her infamous announcement to the world that the “probable cause” of AIDS had been found. In doing so, she effectively shouted ‘Sniper!!!’ in the crowded theater of our lives. The response was immediate and the stampede began. Many of us died in the ensuing panic, frantically dodging elusive ‘bullets’, and searching for a way out– any way out–terrorized into experimental treatments of all kinds in our desperate attempts to escape the hail of gunfire that we had been told was ravaging our bodies and would ravage our world.
Never having been one to run headlong over cliffs with large groups of people, when I heard this announcement, I chose to take a breath, and try to see if there was more information about the whole monstrously apocalyptic business before deciding what my options as an individual might be. I must say that I have employed a healthy skepticism about just about everything at one time or another for most of my life. I have never been very big on received wisdom, preferring instead to read a great deal and then decide for myself. The claims about the cause of AIDS were no different to me. I waited. I read. My journey as an HIV skeptic had begun.
My life since then has been a series of awakenings, each deeper than the last. I am not the person I was 18 years ago, when I first began reading about all this, and my skepticism about AIDS science has evolved more than I could have ever predicted, as has my relationship to all things ‘HIV’.
When the ‘HIV’ panic began to rumble on the horizon in the mid 1980’s, I was still a student and really too much of a wall-flower to even get dates. Going to bars was always a bit of a side-show: me too terrified to even introduce myself, yet so anxious to meet someone it hurt. I must have appeared more than a bit constipated, truth be told. It didn’t help that I looked like jail-bait. Needless to say, I rarely got laid, and it wasn’t until much later that I even managed to date anyone. A combination of this inability to meet anyone and my own innate skepticism meant that the whole ‘HIV’ thing flew pretty low on my radar. At first, I didn’t give it too much thought except that it seemed mysterious, tragic and somehow removed from my own life.
Some years later, I had begun seeing numerous articles in Spin Magazine about questions some scientists were asking about ‘HIV”s purported relationship to AIDS and I was fascinated. I had just been introduced to some of the seminal work of Peter Duesberg by my friend Rob. Then another friend, Brent, brought an ad for Christine Maggiore’s book ‘What if Everything You Thought You Knew About AIDS Was Wrong’ to my attention and I ordered it right away. Suddenly it was raining AIDS dissent. All of this certainly helped prevent me from joining the headlong rush to judgment that poisoned the lives of so many of us.
Thank God, because otherwise I would have been much less prepared when, later in 1996, I myself tested ‘HIV’ positive. That experience, and its effect on me, are cause for a whole other essay of its own, which will, no doubt, get written. I will say now that no amount of reading could have prepared me for–or protected me from–the landslide of confusion and fear that diagnosis released.
However, the fact that I had a number of friends around me who had tested ‘HIV’ positive, with no immediately disastrous effect on their health, certainly served to demystify things to some degree, and interestingly, everyone I knew who’d been diagnosed also remained extremely skeptical about this new ‘Gay’ disease and ‘HIV”s purported role in it. I also found myself blessed with an extraordinary and supportive therapist, who supported me without question as I struggled through it all. It was like I was already part of some circle of skeptics even before I tested positive myself – a circle for which I am very grateful. Rob in particular had taken great pains to read up on the dissenting views on ‘HIV’, and then, as now, dissident information always seemed to make more sense, or at least leave room for new information in a way the mainstream never could, and still doesn’t.
There was a great deal to take in, so much information mainstream AIDS organizations weren’t making available. It was like an avalanche. How could I have not known about this controversy? I couldn’t get over how much censorship these groups employed, either willfully or by accidental omission, I was never sure. I did encounter a few thoughtful and open-minded people from within the AIDS mainstream. These moderate voices were and still are unfortunately few within the AIDS mainstream, so I and a few friends decided to form an activist/support group in response to the void of dissenting information so we could help others become more informed about the true, broader state of AIDS science. It was exhilarating to raise awareness of alternative views and support each other as we attempted to forge an informed approach to health.
We hosted a number of events, the first of which was a talk by Christine Maggiore who spoke eloquently and with great dignity to a packed house about her story. Then we had Nobel Winner Kary Mullis who spoke to an even larger audience about his exploration of AIDS science. We got a ton of press. There was a great deal of discussion in the Gay community, and many letters to the editor of the local Gay paper. It was a truly invigorating time. We also started monthly meetings where we discussed our fears and our health, and amassed a huge library of reading material.
Looking back at my dissident beginnings, I sometimes cringe at the person I was for a while early on. So certain about it all, and so determined to show people the ‘light of everlasting truth’. Lord I got preachy! I found myself almost itching for a fight all the time, like some kind of scientific nerd on steroids. ‘HIV’ this and ‘HIV’ that. Nothing could shut me up. I suppose it was all a part of developing a healthier relationship to the whole thing, but man, I got tiresome. I don’t know how the people around me stood it. If there’s one thing I cannot personally stand, it’s fervor, and god knows I got fervent! Please forgive me…
Like many young people I thought I could change the world. I carried my books and flyers, and all the facts in them like ammunition, always ready to be replenished at a moments notice. I was more warrior-like than I care to admit. I was so earnest, just like those Jehovah’s Witnesses who come to the door with their religious tracts they like to give out. I would spread the word and the word was: Hope!
“Look-out world, get off my runway…”
Out of the corner of my eye I would see people start to glaze over as I went off on some sonorous, long-winded sermon about ‘HIV’ antibodies, or ‘HIV’ Isolation. I wouldn’t let that stop me though, and I’d plow ahead anyway because these people needed to know!
It wasn’t until a friend of mine called me out on the preachiness of it, suggesting that I might want to modify my intensity if I really wanted to be heard. He admired my passion, but felt I was more caught up in my own need to be heard than my need to hear others. Ouch. He was right. I needed to calm down.
I started to try to form thoughts in questions rather than pronouncements as I conversed with people. I started to accept that not everyone was ready to listen to the kind of earth-shaking ideas I might have to share. I learned to respect people’s own right to remain…ignorant of all this controversy. I came to understand that people really do have a right to their boundaries, and I would have to find more subtle ways to invite them to learn more.
I ditched the preachiness. At least I hope I did.
At the beginning, there was a very vocal faction among us, and within the broader dissident community, who wanted, understandably, to focus on how dangerous ‘HIV’ drugs were. They favoured carrying placards with slogans like “AIDS Drugs Kill” at public events. As concerned as I was about these drugs, I was never very comfortable with this approach, feeling down deep that we were just replacing one dogma with another. And it seemed to me on some level that it over-simplified a complex problem. Although I think I might have been slightly more comfortable with placards that said “High-Dosage AZT Kills”, which we really knew was true at the time, the newer ‘HIV’ drugs seemed less immediately toxic, and did seem to give some quality of life back to some patients. Maybe I’m just a stickler. Perhaps it was the black and whiteness of the ‘sound bites’ that I couldn’t comfortably live with.
And I have always been uncomfortable with chanting in public.
By then I had also encountered a feminist health collective working out of Ottawa, Canada – Women’s Health Interaction – and been deeply influenced by them. Their principles of bridge-building and compassionate dialogue changed the way I viewed my activism, and the world, forever. Their publication: ‘Uncommon Questions: a Feminist Exploration of AIDS’ remains one of the best things I’ve ever read… it’s inquisitive, balanced, invitational and brilliant.
Then my world view really shifted when some of our group became seriously ill and began to die. It really shook me up. I had been so focused on dissident critiques of ‘HIV’ theory, that I had somehow forgotten that good questions are only a part of the work. People, then as now, have real health problems. Looking back, I think some of us, myself included, had been using the scientific critiques as a kind of shield from the hail of death we felt surrounded by. We found ourselves poorly prepared to deal with the health challenges that some of our members were facing. What, really, could we offer anyone who was unlucky enough to be seriously ill?
Some of us entered that health free-fall that would become so familiar. Some of us died. All we could do as a group was provide support and hope, however thin it might be. My personal reservations about the ‘AIDS Drugs Kill’ slogans, really grew. The absoluteness of it left me wary, and I kept asking myself: How could these sound-bites be helpful to people who were already struggling with a health crisis? Clearly these drugs were extremely dangerous, but slogans don’t cure people, I kept thinking. I worried that they just muddied the waters. It wasn’t like we had some other clear treatment options to give people. That just hadn’t been our focus. I felt so helpless.
It is tragic that we were and are so severely limited by the profit-driven, pharmaceutical focus of almost all medical research. Finding reliable studies that look at the effectiveness of non-toxic approaches to healing the body is nigh impossible. If one attempts to exercise one’s right to medical self-determination, one is in for an exhausting journey. Yes, there are many anecdotal reports of people finding other viable options for restoring their health, but for every one of those there is a horror story of someone unable to find a solution that works. It’s absolutely bewildering, and more than a little humbling.
Yet surely, I thought, the most compassionate approach was to take the view that ‘HIV’ treatments needed to be approached with extreme caution, but that not all were as toxic as AZT, and discretion was entirely appropriate? Surely we could still be supportive of those who felt they needed to try Highly Active Antiretroviral Therapy (HAART) to alleviate their illness? I realized a kind of polarity had occurred between: those AIDS dissidents who felt ‘HIV’-based treatments were not an option ever and those who felt they were, at least sometimes.
This was never more clear to me than when my friend Brent developed meningitis. He had been diagnosed ‘HIV’ positive, and was struggling to get his doctors to clarify to what degree ‘HIV’ might be involved from their viewpoint. He had read about ‘HIV’ drugs shortcomings and seen many of our friends suffer horribly on them. After initially treating the meningitis itself, his ‘HIV’ specialist felt that his illness was connected to ‘HIV’ and was encouraging HAART. Brent was understandably nervous about committing to that path. One day he called me in Berlin, where I was at a school learning to speak German, and he was deeply upset and confused. He didn’t know what to do. His health had not rebounded after the bout with meningitis and he had developed pneumonia. In that moment, all I knew was that he had run out of available options. What should he do? Again I felt helpless. He was crying. I realized that he felt he had failed as a dissident, because he was ill. Oh my God, I thought!
(This same realization would hit me again and again with different dissident friends: They often felt they had failed somehow because they became sick.)
I took a very deep breath, choked back my own tears, and suggested he put aside his fear, put aside the anxiousness, embrace the unknown and pick a path that felt right. There was no failure. There was no ‘one true path’, and none of us would judge him for his choices. He chose HAART – the new standard of ‘HIV’ treatment at the time.
He improved for a time, regained some small quality of life for a few years, then developed severe edema as his kidneys failed him, and then he died. How will I ever know if I advised him wisely? The painful truth of it is: I can’t ever know for sure.
This division around how to handle the issue of ‘HIV’ drugs never ceased to be a challenge. Some of the people who came to us for support still felt ‘HIV’ drugs might be their only option at some point, and they seemed to be left feeling outcast and without a safe place within the group. To this day, I do not know how to reconcile my desire to be supportive of anyone facing the choice to take these drugs with my knowledge of their dangers. The two seemingly opposite desires are unhappy companions, and wrestle with each other constantly, even now.
The Firing Squad of Maybe
In the late 1990s, I remember a pivotal talk I had with Colman Jones, who has written extensively on the connection between Syphilis and AIDS. He mentioned that if he had been diagnosed ‘HIV’ positive, he would be very concerned. I asked him why, and he said that the unusually high levels of certain antibodies in ‘HIV’ positive people seemed significant in that it did, itself, seemed to suggest a potentially degenerative condition in some patients, and also seemed to correlate with immune dysregulation, at least sometimes. This was an eye-opener for me and it has stayed with me. Since that time, I have read and seen enough to realize that the correlation between ‘HIV’ positivity and illness isn’t always accidental. Although it’s clear that many ‘HIV’ + people do not appear to experience a chronic, or degenerative immune dysfunction, many do seem to nonetheless.
No one with this diagnosis among my circle of non-HAART-taking, ‘HIV’ positive friends has had a health history that even vaguely resembles that of my ‘HIV’negative friends. Something is going on that sets their health apart. Do I feel that testing positive is a reason to panic? No. A reason to pause for thought? Probably. These antibodies do occur together and separately in many other non-life-threatening conditions. The missing pieces of the puzzle are how to identify those other factors that determine if and when this group of antibodies has predictive meaning or not, and for whom. When are they predictive? And why? If anyone can find the answer to those questions, I’d wager we’d be much closer to truly understanding and curing AIDS.
To me, after years of reading about it, what these antibodies most likely mean as far as our health hinges not so much on their presence per say, but on the high titre (level) of certain auto-immune antibodies commonly found in ‘HIV’ positive people. I don’t see this high titre arising randomly. This may, in my view, turn out to be predictive of trouble, but likely has more in common with non-specific tests for markers of inflammation like the Erythrocyte Sedimentation Rate test, than with truly diagnostic tests. The questions remain: Is testing positive on the ‘HIV’ test simply a kind of red flag for a persistent or transitory inflammatory state? Is it a kind of measure of a state of accelerated aging? I find the correlation with this test and illness compelling, and these antibodies do seem to mean…something. But the vagueness of the correlation is maddening: ‘Sometimes’. ‘Perhaps.’ The Firing Squad of Maybe…
Whatever the ultimate meaning of these antibodies, among my friends within our group, Kate, Chris, Terry and Sophie all took the view that testing ‘HIV’ positive had no prognostic or predictive value. Certainly this may have been true for at least some of them, and regardless of my personal opinions at the time, I respected their approach. Although they seemed entirely fearless about being diagnosed ‘HIV’ positive, they were unable to break through their understandable fear of ‘HIV’ drugs’ toxicities, and were also unable to find viable options as their health deteriorated in different ways. Sadly, they are all dead. What does this mean ultimately? Would HAART have helped in some way? Would it have made it all worse? I don’t really know. I certainly have absolutely no faith in the ‘crystal-ball-gazing’ pronouncements of zealous defenders of the AIDS Orthodoxy about what they love to call ‘preventable’ deaths. Ah, yes: the allure of Absolute Certainty. More on that later.
After watching all of this, it started to feel as though we were ducks in a shooting gallery where one only had to wait long enough and a bullet would get you. Someone or something seemed to be lurking around corners taking pot-shots at us, like some rage-filled sniper on a mad, mad mission to kill us all. It was terrifying. And humbling too. How does one shield oneself from this hail of death? From this invisible sniper? Which are the real bullets? When should I duck? How does one stay lucid when seemingly faced with the choice between letting some exotic brain infection run wild, or taking a potential poison?
It has been painfully difficult to watch: So many ‘HIV’ positive dissidents I know have faced some eye-brow raising health-crisis. It has, no doubt, affected the way I view the whole business and especially these… these… antibodies. There does seem to be an “AIDS Process” at work in some people and the immune system does seem to be deteriorating, variably. Yet there has been no approach which suggests a way forward for everyone. Every case has its own painful lessons, and sometimes brings its own hope. All the more reason to be humble about our ability to predict the future of anyone’s health. I know there are exceptions to my experience out there, but I can only speak from my own situation here at home. It has brought me to what I see as the final dilemma of AIDS dissidence: Vitamins and diet, and lifestyle changes aren’t always enough, ‘HIV’ treatments aren’t really safe, and doing nothing can be fatal.
I really don’t know with any certainty how much the state of my friends’ immune systems played a role in their illnesses, nor can I be sure how much their choices did. I’m not sure any of us can know – even now. Yet their deaths do not seem to me to be entirely coincidental. This diagnosis seems predictive of something. Sometimes. All I have is my own experience…my anecdotes – my friends.
This is the great problem of AIDS: just exactly what is the best course if you face it–whatever it is? The unknown and the unpredictable lurk everywhere in all this. How does one find a balance between doing nothing and doing too much? Clearly that has to be a matter of personal choice as there are no answers that are right for everyone.
Ducks in a shooting gallery.
In the end, it was all too much for our little group. Although some of us simply moved away, some of us died, and still others grew despondent. Those of us who remained have drifted apart. As happens with activism, the energy dissipated. I’m not sad about it really; these things have their day, and we did accomplish a great deal.
However, I would see this same arc of enthusiastic discovery of AIDS dissent and subsequent energetic activism followed by a dissipation of energy–often accompanied by bruising disillusionment–over and over within the AIDS dissident community. It seems to me to have left the movement atomized, its individual members emotionally torn and bleeding. It has been sobering, humbling and at times has left me deeply uncertain of where, exactly, this was all headed.
End of Part One.
Coming Soon, Part Two of “A Shooting Gallery and an Hour Glass”
Born in 1965 in Toronto, Ontario, “William A.” currently lives with his Partner in rural Ontario. He has worn many hats, from working in theater to running a restaurant. He has had a successful, small business for coming-up to 25 years now. His interest in ‘HIV’ and AIDS was piqued by conversations with friends in the late 1980’s, then numerous articles and books fueled the fire, as did his own experience of being diagnosed ‘HIV’ positive in 1996.
He loves time at home and in the garden with his Partner of 6 years, loves languages, speaks German and some Italian, French and Spanish, and has a hope of learning Mandarin. In addition to a love of travel, he loves good food, music of all kinds, architecture, heritage preservation, film, and the company of friends.