I really, really, don’t care what causes AIDS
In all the years I have been educating myself about HIV and AIDS, I have never met even one AIDS Reappraiser who wasn’t personally affected by this baffling illness in some way, either by a loss to it of someone very close or by struggles with their own health ‘related’ to an HIV diagnosis. I, personally, have lost count of the friends who I have watched shrivel-up and die over the years — all of them so young — since this dark, bewildering cloud of sickness blew into all of our lives. I feel shell-shocked and exhausted from the sheer numbers. Looking back, I think death stopped meaning anything to me years ago.
Now, when I hear of another friend who is slipping away, I go into a kind of withdrawal — trying desperately to avoid the inevitable next loss somehow. Horrifically, I have lost all patience with the sick and dying. I feel like a dry well…yet somehow filled to overflowing with a sense of hopeless inadequacy and shame that I have so little left to give them.
As I write I realize that I am in a kind of Denial: Denial of my ability too survive even one more death-bed loss. One more senseless, unexplained passing. And yet each time I lose another friend, I survive somehow, each time scarred more deeply.
In years of watching these precious people waste away and die, I have learned nothing about exactly how they died, or what killed them really. It varies so immensely.
I have known those who seem to carry-on just fine faced with a condition so many insist will always kill, blithely continuing their lives with an astonishing ‘if it ain’t broke, don’t fix it’ attitude. Doing nothing but simply living far away from the panic and fear. Still smoking. Still drinking. Not even vitamins. And carry on they still do. Are they just lucky? Or just wise? Both maybe?
Many of those I’ve lost, followed their Doctors advice, or succumbed to peer-pressure, to take ‘HIV’ drugs, only to die of the toxicities. Others avoided those treatments entirely and died of various untreated infections or wasting - untreated because of a helpless terror and desperate unwillingness to deal with the frailty of their health, or have anything to do with Western Medicine. Or any Medicine for that matter. Some were always healthy and then suddenly not, and some always seemed unusually fragile and vulnerable to illness. And everything in-between. All that seems to tie them together is this vague diagnosis – these ‘HIV’ antibodies. I have no idea what that means. I do know that in watching all this from so close, no tests, no medical ‘markers’ are even slightly reliable or predictive. It’s a total crapshoot. Anyone with this diagnosis is, in my opinion, in a kind of medical and scientific free-fall. Grab your parachute. You could die. Or not.
One thing is absolutely clear to me: I have never met even one HIV positive person who felt healthy whose quality of life was improved by HIV drugs. What benefit there may be is certainly limited to those very near death, in my experience.
The whole business is ever-present in my life. There are so many, many reasons that AIDS reappraisers like me argue so passionately for a re-examination of the diagnosis, causes, treatments and prevention of AIDS.
Every one of those reasons was a living, breathing person.
We understand all to well what it is to watch friends die — to feel the desperate loss over and over and over. Those experiences are precisely why I feel that I owe it — we all owe it — to them to look fearlessly at everything we know up to now, particularly the unexplained complexities that surround our collective assumptions about AIDS’ causes and treatments. For their sake and all those who struggle with an HIV diagnosis, I ask that we cast an unflinching eye on the shortcomings of HIV theory. How could that be wrong? And yet when any of us dare speak out publicly, we are called Aids Deniers. Anyone who points out complexities is called evil. We are pilloried in the media, thrown out of universities and forced to the farthest regions of quackdom, and anyone seen to be giving us voice is treated with the same hateful disdain.
Interestingly, even Dr Luc Montagnier, the Nobel Prize-winning co-discoverer of HIV, has argued that HIV cannot cause AIDS by itself. Is he now an ‘AIDS Denier’ as well because he asserts that AIDS isn’t so simple? Is he, too, a dangerous nutbar for stepping outside the mainstream, reductionist bubble?
The AIDS Police
The term ‘Denier’ began to be bandied about many years ago by key players within the AIDS orthodoxy intent on curtailing open, public discussion of the causes of AIDS. Highly paid AIDS researchers like Dr. John Moore and Dr. Mark Wainberg — people apparently full of rage that anyone questions the premise upon which, it must be noted, they have built their careers, paid their mortgages and upon which their reputations seem to rest. The way the word ‘denier’ makes its implicit connection to the ugliness of Holocaust denial is very effective at eliminating any possibility of nuanced public discussion on the issues of AIDS’ complexities.
Indeed, Journalists are now quite loathe to give voice to anyone who might argue that AIDS is more complex than simply infection with HIV for fear they are giving voice to the AIDS equivalent of Neo Nazis. And they are quite self-righteous in their censorship. They justify it, claiming they are ‘saving lives’ by preventing us poor sods from ever having an inkling that not all is as it appears. They are taking care of us. The most recent example being the shrill calls for censorship dogging Brent Leung’s powerful, revealing and award-winning documentary: House of Numbers.
Do they really fancy that they are all that stand between us and an abyss of disease? Do they honestly imagine that if we all got wind of the fact that AIDS might be more than simply an infectious ‘social disease’, we’d all run amok, f***ing as many people as we possibly could like a bunch of demented, sex-crazed Typhoid Marys? Do they genuinely believe that total censorship of a frank, public discussion of the serious toxicities and limitations of HIV drugs is fair to patients? What happened to informed consent? Oh, wait — I remember: The AIDS Police scream shrilly that by drawing attention to the uncomfortable reality that HIV drugs can harm patients, we are actually killing them by muddying the waters. We’re confusing them by emphasizing the wrong things. Do they then mean to suggest that informed consent itself is dangerous?
These people need therapy.
Funny how AIDS reappraisers who ask for transparency and dialogue, or warn of the shortcomings or dangers of HIV treatments are accused of causing unnecessary AIDS deaths. Strange that when someone dies after years of choosing not to take HIV drugs, fingers are immediately pointed at the AIDS denialists. And yet, when a patient dies after 2 or 6 or 12 years on HIV treatments, the AIDS Police speak of the extra few years treatment ‘gave’ the patient. Curiously, these self-described ‘life-savers’ accept no responsibility for those who died from high-dosage, experimental AZT monotherapy in the 1980’s, or those whose entire skin ‘detaches’ while on AIDS drugs like Nevirapine. I don’t see them clamouring to confess their guilt. I hear no cries of ‘Murderer’! I guess it’s just collateral damage to them. ‘We did our best’. So one-sided. So self-serving. Well. It seems their Ivory Towers are built much higher than I ever imagined.
It was so much easier when I believed HIV was the One, the Only cause of AIDS. Everything was so much less complicated: I rested assured that all was on track with HIV-based research, even if progress was slow, and that if I were HIV Positive and felt inclined to pursue HIV drugs as a treatment option, I could have confidence they were the safest and wisest possible approach to dealing with HIV infection. I could throw myself at the mercy of the medical establishment unfettered by concerns about the science behind it all, and never worry my pretty little head about minor questions like HIV isolation, or the real clinical meaning — or lack of meaning — of testing HIV positive. But that place of ignorance, that blind trust in the Medical Establishment, and my unquestioning faith in consensus science — now THAT was denial. Denial of reality, denial of my own autonomy, denial of my own right to informed consent, and denial of my responsibility to myself.
These days, far from being in denial as I wrestle with all the unanswered questions HIV science generates daily, I would describe my mindset as being in full state of acknowledgment of the real state of AIDS science. I acknowledge that there are risks in doing nothing to treat HIV. I acknowledge that there are risks in treating it conventionally. In reading the available literature, I have no choice but to acknowledge the ever-changing nature and complexities of AIDS science and HIV theory. It’s all right there in the published literature. In acknowledging that science isn’t static and should never be political, I am hardly in denial. It is a true acceptance of the ever-changing reality of scientific progress and the open inquiry such progress requires.
Conveniently forgotten in all of the hate-filled, desperate oversimplification of AIDS is that there was a time when Cancer seemed simple too. Yet those days are long gone. We certainly don’t talk of single causes any longer — and with good reason: we simply know too much. The evidence has overwhelmed our desire for simplistic, reductionist answers. So when we speak of cancers’ many contributing causes, we now wisely speak of environmental factors, genetic predisposition, toxins and mutagens. Cancer is multifactorial, we say. We weigh the benefits of chemotherapy against the risks of its inherent toxicity. When making treatment decisions we talk about Quality of Life.
So, why is it so very repugnant and dangerous to consider openly the possibility that AIDS, too, may be multifactorial? That the choice to treat it conventionally (or not), and the timing of that treatment must be a personal choice? Who would it harm if this came to be accepted wisdom? Why is it so important to shut down discussion, ruin careers and slander reputations? What are they protecting so…so fervently?
Public Health?
Patients?
Me?
Please. The only people protected by such bigoted behaviour are those whose careers depend - those who have gambled everything — on AIDS being caused simply by infection with one type of retrovirus. Do they truly think we don’t recognize conflict of interest when we see it? I, for one, am far more likely to listen to the scientist or journalist who has lost everything trying to express a point of view, or give it voice, than I am to one whose mortgage payments depend on the prevailing view they so vociferously defend.
No Stone Unturned
If patient welfare, prevention and a cure for AIDS were truly the focus within the AIDS research community, they would be looking hard at the broader significance to the immune system of the high titre of antibody seen in so many HIV positive people. We would be looking at: oxidative stress; exposure to too many different semens anally; drug use; inhalents; HIV; undiagnosed or incompletely treated Syphilis infections; HIV treatments themselves; Human Herpes Virus 6; intestinal health; access to clean water; endemic infections; poverty; nutrition and stress, just to name few factors known to damage, or suspected of damaging immune function.
But no. We just love simple answers to complex problems too much. It makes public health policy so much easier.
Frankly, in the end, I really, really don’t care what causes AIDS. I just want people to stop suffering and dying from whatever it is. It appalls me deeply that after all the hundreds of billions of dollars in research — possibly more than that spent on researching all other microbes combined — HIV research has ‘succeeded’ only in giving patients the horrifying choice between either dying slowly of Opportunistic Infections associated with a damaged immune system, or dying slowly of Liver Failure or having your skin peel off or maybe a Heart Attack caused by HIV drugs themselves. All the while ignoring the patients who do just fine for rather a long time when left to pursue their lives unmolested. So pick your death.
Lovely.
What a success story. What a choice. I’m sure we’re all very, very proud…
Looking at the pathetic, toxic fruits of HIV research, is it any wonder people look beyond it for help? Perhaps the AIDS Police shout so shrilly to distract us from their shame at having failed to cure even one patient in 25 years? Can you imagine the fuss if Cancer research had failed to yield a cure for even one case? Can you even imagine? In my view these people have nothing to brag about and shouldn’t be pointing fingers at anyone. They might more appropriately beg forgiveness for their massive failure. These are the same people who trumpeted to the world that there would be a Vaccine by 1990. I don’t know about your friends, but my friends are still dying.
Given those embarrassing results, instead of stalking and slandering those who offer up unique perspectives on AIDS, or censoring those — like director Brent Leung — who challenge our assumptions and our direction, perhaps they could spend some of that time, energy and money engaging with the Peter Duesbergs of the world in turning over every stone to find safe treatments, effective prevention, broader understanding, and a cure.
Now, when I hear of another friend who is slipping away, I go into a kind of withdrawal — trying desperately to avoid the inevitable next loss somehow. Horrifically, I have lost all patience with the sick and dying. I feel like a dry well…yet somehow filled to overflowing with a sense of hopeless inadequacy and shame that I have so little left to give them.
As I write I realize that I am in a kind of Denial: Denial of my ability too survive even one more death-bed loss. One more senseless, unexplained passing. And yet each time I lose another friend, I survive somehow, each time scarred more deeply.
In years of watching these precious people waste away and die, I have learned nothing about exactly how they died, or what killed them really. It varies so immensely.
I have known those who seem to carry-on just fine faced with a condition so many insist will always kill, blithely continuing their lives with an astonishing ‘if it ain’t broke, don’t fix it’ attitude. Doing nothing but simply living far away from the panic and fear. Still smoking. Still drinking. Not even vitamins. And carry on they still do. Are they just lucky? Or just wise? Both maybe?
Many of those I’ve lost, followed their Doctors advice, or succumbed to peer-pressure, to take ‘HIV’ drugs, only to die of the toxicities. Others avoided those treatments entirely and died of various untreated infections or wasting - untreated because of a helpless terror and desperate unwillingness to deal with the frailty of their health, or have anything to do with Western Medicine. Or any Medicine for that matter. Some were always healthy and then suddenly not, and some always seemed unusually fragile and vulnerable to illness. And everything in-between. All that seems to tie them together is this vague diagnosis – these ‘HIV’ antibodies. I have no idea what that means. I do know that in watching all this from so close, no tests, no medical ‘markers’ are even slightly reliable or predictive. It’s a total crapshoot. Anyone with this diagnosis is, in my opinion, in a kind of medical and scientific free-fall. Grab your parachute. You could die. Or not.
One thing is absolutely clear to me: I have never met even one HIV positive person who felt healthy whose quality of life was improved by HIV drugs. What benefit there may be is certainly limited to those very near death, in my experience.
The whole business is ever-present in my life. There are so many, many reasons that AIDS reappraisers like me argue so passionately for a re-examination of the diagnosis, causes, treatments and prevention of AIDS.
Every one of those reasons was a living, breathing person.
We understand all to well what it is to watch friends die — to feel the desperate loss over and over and over. Those experiences are precisely why I feel that I owe it — we all owe it — to them to look fearlessly at everything we know up to now, particularly the unexplained complexities that surround our collective assumptions about AIDS’ causes and treatments. For their sake and all those who struggle with an HIV diagnosis, I ask that we cast an unflinching eye on the shortcomings of HIV theory. How could that be wrong? And yet when any of us dare speak out publicly, we are called Aids Deniers. Anyone who points out complexities is called evil. We are pilloried in the media, thrown out of universities and forced to the farthest regions of quackdom, and anyone seen to be giving us voice is treated with the same hateful disdain.
Interestingly, even Dr Luc Montagnier, the Nobel Prize-winning co-discoverer of HIV, has argued that HIV cannot cause AIDS by itself. Is he now an ‘AIDS Denier’ as well because he asserts that AIDS isn’t so simple? Is he, too, a dangerous nutbar for stepping outside the mainstream, reductionist bubble?
The AIDS Police
The term ‘Denier’ began to be bandied about many years ago by key players within the AIDS orthodoxy intent on curtailing open, public discussion of the causes of AIDS. Highly paid AIDS researchers like Dr. John Moore and Dr. Mark Wainberg — people apparently full of rage that anyone questions the premise upon which, it must be noted, they have built their careers, paid their mortgages and upon which their reputations seem to rest. The way the word ‘denier’ makes its implicit connection to the ugliness of Holocaust denial is very effective at eliminating any possibility of nuanced public discussion on the issues of AIDS’ complexities.
Indeed, Journalists are now quite loathe to give voice to anyone who might argue that AIDS is more complex than simply infection with HIV for fear they are giving voice to the AIDS equivalent of Neo Nazis. And they are quite self-righteous in their censorship. They justify it, claiming they are ‘saving lives’ by preventing us poor sods from ever having an inkling that not all is as it appears. They are taking care of us. The most recent example being the shrill calls for censorship dogging Brent Leung’s powerful, revealing and award-winning documentary: House of Numbers.
Do they really fancy that they are all that stand between us and an abyss of disease? Do they honestly imagine that if we all got wind of the fact that AIDS might be more than simply an infectious ‘social disease’, we’d all run amok, f***ing as many people as we possibly could like a bunch of demented, sex-crazed Typhoid Marys? Do they genuinely believe that total censorship of a frank, public discussion of the serious toxicities and limitations of HIV drugs is fair to patients? What happened to informed consent? Oh, wait — I remember: The AIDS Police scream shrilly that by drawing attention to the uncomfortable reality that HIV drugs can harm patients, we are actually killing them by muddying the waters. We’re confusing them by emphasizing the wrong things. Do they then mean to suggest that informed consent itself is dangerous?
These people need therapy.
Funny how AIDS reappraisers who ask for transparency and dialogue, or warn of the shortcomings or dangers of HIV treatments are accused of causing unnecessary AIDS deaths. Strange that when someone dies after years of choosing not to take HIV drugs, fingers are immediately pointed at the AIDS denialists. And yet, when a patient dies after 2 or 6 or 12 years on HIV treatments, the AIDS Police speak of the extra few years treatment ‘gave’ the patient. Curiously, these self-described ‘life-savers’ accept no responsibility for those who died from high-dosage, experimental AZT monotherapy in the 1980’s, or those whose entire skin ‘detaches’ while on AIDS drugs like Nevirapine. I don’t see them clamouring to confess their guilt. I hear no cries of ‘Murderer’! I guess it’s just collateral damage to them. ‘We did our best’. So one-sided. So self-serving. Well. It seems their Ivory Towers are built much higher than I ever imagined.
It was so much easier when I believed HIV was the One, the Only cause of AIDS. Everything was so much less complicated: I rested assured that all was on track with HIV-based research, even if progress was slow, and that if I were HIV Positive and felt inclined to pursue HIV drugs as a treatment option, I could have confidence they were the safest and wisest possible approach to dealing with HIV infection. I could throw myself at the mercy of the medical establishment unfettered by concerns about the science behind it all, and never worry my pretty little head about minor questions like HIV isolation, or the real clinical meaning — or lack of meaning — of testing HIV positive. But that place of ignorance, that blind trust in the Medical Establishment, and my unquestioning faith in consensus science — now THAT was denial. Denial of reality, denial of my own autonomy, denial of my own right to informed consent, and denial of my responsibility to myself.
These days, far from being in denial as I wrestle with all the unanswered questions HIV science generates daily, I would describe my mindset as being in full state of acknowledgment of the real state of AIDS science. I acknowledge that there are risks in doing nothing to treat HIV. I acknowledge that there are risks in treating it conventionally. In reading the available literature, I have no choice but to acknowledge the ever-changing nature and complexities of AIDS science and HIV theory. It’s all right there in the published literature. In acknowledging that science isn’t static and should never be political, I am hardly in denial. It is a true acceptance of the ever-changing reality of scientific progress and the open inquiry such progress requires.
Conveniently forgotten in all of the hate-filled, desperate oversimplification of AIDS is that there was a time when Cancer seemed simple too. Yet those days are long gone. We certainly don’t talk of single causes any longer — and with good reason: we simply know too much. The evidence has overwhelmed our desire for simplistic, reductionist answers. So when we speak of cancers’ many contributing causes, we now wisely speak of environmental factors, genetic predisposition, toxins and mutagens. Cancer is multifactorial, we say. We weigh the benefits of chemotherapy against the risks of its inherent toxicity. When making treatment decisions we talk about Quality of Life.
So, why is it so very repugnant and dangerous to consider openly the possibility that AIDS, too, may be multifactorial? That the choice to treat it conventionally (or not), and the timing of that treatment must be a personal choice? Who would it harm if this came to be accepted wisdom? Why is it so important to shut down discussion, ruin careers and slander reputations? What are they protecting so…so fervently?
Public Health?
Patients?
Me?
Please. The only people protected by such bigoted behaviour are those whose careers depend - those who have gambled everything — on AIDS being caused simply by infection with one type of retrovirus. Do they truly think we don’t recognize conflict of interest when we see it? I, for one, am far more likely to listen to the scientist or journalist who has lost everything trying to express a point of view, or give it voice, than I am to one whose mortgage payments depend on the prevailing view they so vociferously defend.
No Stone Unturned
If patient welfare, prevention and a cure for AIDS were truly the focus within the AIDS research community, they would be looking hard at the broader significance to the immune system of the high titre of antibody seen in so many HIV positive people. We would be looking at: oxidative stress; exposure to too many different semens anally; drug use; inhalents; HIV; undiagnosed or incompletely treated Syphilis infections; HIV treatments themselves; Human Herpes Virus 6; intestinal health; access to clean water; endemic infections; poverty; nutrition and stress, just to name few factors known to damage, or suspected of damaging immune function.
But no. We just love simple answers to complex problems too much. It makes public health policy so much easier.
Frankly, in the end, I really, really don’t care what causes AIDS. I just want people to stop suffering and dying from whatever it is. It appalls me deeply that after all the hundreds of billions of dollars in research — possibly more than that spent on researching all other microbes combined — HIV research has ‘succeeded’ only in giving patients the horrifying choice between either dying slowly of Opportunistic Infections associated with a damaged immune system, or dying slowly of Liver Failure or having your skin peel off or maybe a Heart Attack caused by HIV drugs themselves. All the while ignoring the patients who do just fine for rather a long time when left to pursue their lives unmolested. So pick your death.
Lovely.
What a success story. What a choice. I’m sure we’re all very, very proud…
Looking at the pathetic, toxic fruits of HIV research, is it any wonder people look beyond it for help? Perhaps the AIDS Police shout so shrilly to distract us from their shame at having failed to cure even one patient in 25 years? Can you imagine the fuss if Cancer research had failed to yield a cure for even one case? Can you even imagine? In my view these people have nothing to brag about and shouldn’t be pointing fingers at anyone. They might more appropriately beg forgiveness for their massive failure. These are the same people who trumpeted to the world that there would be a Vaccine by 1990. I don’t know about your friends, but my friends are still dying.
Given those embarrassing results, instead of stalking and slandering those who offer up unique perspectives on AIDS, or censoring those — like director Brent Leung — who challenge our assumptions and our direction, perhaps they could spend some of that time, energy and money engaging with the Peter Duesbergs of the world in turning over every stone to find safe treatments, effective prevention, broader understanding, and a cure.
Bookmark
Comments (7)
imagine if the pilot spinned fear - we would all never travel
I have always asked myself - so many reseaches are done, none of them ever gets published as long as it does not stir fear in us. the result has to wear a scarely face, a halloween constume.
The only time you find a published research it one that has a smilly face. Money is a very wicked in science, it can find out the truth, heal people, keep the truth concealed, and create dealy meds. after all if you are a scientist the govt will help you do both the good and the bad.
there are tin openers, the aids hoax is an ey opener for human race to show what can be don in teh name of profit.
Can you imagine if the pilot of a plane always spoke fear to his/her passengers, airlines would not make a dime.
he always says what is in a manner that does not spin fear.
He wants to be trusted, he defends the plane and his/her passengers with his/her/life. scientists and doctors have a a humanity code of conduct that expects them to add value to life and save life. speak the truth with our fear or favour- that is the bottom line. instead those who do, they are censored or sidelined, and degraded.
The only time you find a published research it one that has a smilly face. Money is a very wicked in science, it can find out the truth, heal people, keep the truth concealed, and create dealy meds. after all if you are a scientist the govt will help you do both the good and the bad.
there are tin openers, the aids hoax is an ey opener for human race to show what can be don in teh name of profit.
Can you imagine if the pilot of a plane always spoke fear to his/her passengers, airlines would not make a dime.
he always says what is in a manner that does not spin fear.
He wants to be trusted, he defends the plane and his/her passengers with his/her/life. scientists and doctors have a a humanity code of conduct that expects them to add value to life and save life. speak the truth with our fear or favour- that is the bottom line. instead those who do, they are censored or sidelined, and degraded.
,
January 10, 2010
|
-
- +1
-
-
...
Brilliant essay Carl. I feel as if you've given words to what I'm feeling.
,
January 10, 2010
-
- +1
-
-
Articulate and Brillianty Written
I just wanted to say how much I appreciated this article, and it's author. Although I've never met Mr. Carl Stryg in person, he is the very first person I ever had contact with and spoke with on the phone after we discovered the massive amount of questions surrounding the HIV theory.
I was taking these very toxic medications for 11 yrs, all the while being told by my doctor that the "side effects" I was experiencing were due to my "having AIDS". Never once did he inform me that these drugs could possibly be causing my slow decline in health. Overall, I believe I was "tolerating" the drugs fairly well, considering I'd been on AZT the whole time.
Anyway, as my husband and I began to read and research the controversy surrounding the theory, we started trying to reach some of the people involved, to help answer the many questions we had.
Carl was the first person I actually was able to reach and speak with by phone. I remember the day clearly, almost 3 yrs ago. He was patient with my questions, reassuring, and listened to everything I was feeling regarding being deceived on such a massive scale.
Never once did he encourage me to stop my drugs.
What he did encourage me to do was ask questions, demand answers, seek evidence, read, research......and then make my decisions being fully informed.
So, thank you Mr. Carl Stryg for your availability, the time you took with me that day, and this wonderful synopsis on how I'm sure most of us are feeling in regards to 25 yrs of HIV "science".
Sincerely,
Karri
I was taking these very toxic medications for 11 yrs, all the while being told by my doctor that the "side effects" I was experiencing were due to my "having AIDS". Never once did he inform me that these drugs could possibly be causing my slow decline in health. Overall, I believe I was "tolerating" the drugs fairly well, considering I'd been on AZT the whole time.
Anyway, as my husband and I began to read and research the controversy surrounding the theory, we started trying to reach some of the people involved, to help answer the many questions we had.
Carl was the first person I actually was able to reach and speak with by phone. I remember the day clearly, almost 3 yrs ago. He was patient with my questions, reassuring, and listened to everything I was feeling regarding being deceived on such a massive scale.
Never once did he encourage me to stop my drugs.
What he did encourage me to do was ask questions, demand answers, seek evidence, read, research......and then make my decisions being fully informed.
So, thank you Mr. Carl Stryg for your availability, the time you took with me that day, and this wonderful synopsis on how I'm sure most of us are feeling in regards to 25 yrs of HIV "science".
Sincerely,
Karri
,
January 10, 2010
|
-
- +1
-
-
Positionality Is Terminal
I really appreciate this article. I think it gets to the heart of something, denial versus acknowledgment, thinking versus dogma.
We search for meaning in death. If death doesn't have meaning, then, I suppose, nothing does. Death causes us to pause and think. If we don't, we are indeed in "denial."
I once heard a psychohistorical researcher present his results of a survey of witnesses to 9/11. He said that, when death is near and evident, what death means to people doesn't change. People confirm their world views and beliefs about death when they go into shock. So the neighbor standing on my rooftop that day, yelling about how he wanted to send troops to the Middle East right then, was doing the same thing that I was when I committed myself against violent ways of solving problems. We were both digging into positions. Which one of us was in "denial"? Both of us were in a deep "acknowledgment" of who we were, our childhood experiences, and what we believed: positionality. It follows that to deny someone's position is to be, to them, "in denial." But what possibilities does their position deny them?
What I've noticed around slow death is a person's struggle with deep positionality. Their most cherished positions are challenged, but they can't move. The person who believes in a certain drug will fight to the end to stay on that drug. The one who puts his faith in alternative medicine is lost in that dogma. He'll "cleanse" himself into oblivion. Faced with a B-12 deficiency and severe anemia, he'll even refuse to eat meat because vegetarianism is "right." Death is the terminal stage of positionality.
We die of being "right," rather than accurate. Accuracy is not "right" but "right now."
What is needed is flexibility. Long-term HIV-positive survivors off the drugs are not immortal. Their situation is, as the article here states, complex and very different from other cases. The "reductionist" boiling-down to one or two factors is just not reality.
A person's positionality comes down to one or two essential attitudes when they face death. In AIDS patients down for the count, I have noticed that their basic position is one of victimhood. You can see this when someone goes into dementia. A friend of mine told me that his mother went psychotic at the end stage of her illness (not AIDS; she was 80 years old and had had a stroke). He said her expression of psychosis was to hallucinate about children running around. All the children, playing, having fun. It was the basic way she met the world, he said: in youth and playfulness and curiosity. AIDS dementia is often expressed as paranoia or victimhood. Suddenly, the patient starts talking about past violent crimes, theft and betrayal, for instance. My grandmother has Alzheimer's and fantasizes about many modes of proper family life, a sense of belonging to a group in a safe place. She was an orphan in Eastern Europe and didn't start from a safe place; she built one in America -- her basic position in life is the conflict between being orphaned and belonging. I sometimes joke that, in my case, psychosis would probably express itself as defiance. I would just throw things. Or I would survive by refusing some dangerous treatment, but die after refusing another one that really is lifesaving. Just out of stubborn orneriness.
The antidote for positionality is flexibility. It's being in the "now," considering, as this article does, every possibility as potentially valid. Shutting off possibility, knowing all the answers already, is not only unrealistic but death-promoting. It IS the disease, and it IS terminal.
We search for meaning in death. If death doesn't have meaning, then, I suppose, nothing does. Death causes us to pause and think. If we don't, we are indeed in "denial."
I once heard a psychohistorical researcher present his results of a survey of witnesses to 9/11. He said that, when death is near and evident, what death means to people doesn't change. People confirm their world views and beliefs about death when they go into shock. So the neighbor standing on my rooftop that day, yelling about how he wanted to send troops to the Middle East right then, was doing the same thing that I was when I committed myself against violent ways of solving problems. We were both digging into positions. Which one of us was in "denial"? Both of us were in a deep "acknowledgment" of who we were, our childhood experiences, and what we believed: positionality. It follows that to deny someone's position is to be, to them, "in denial." But what possibilities does their position deny them?
What I've noticed around slow death is a person's struggle with deep positionality. Their most cherished positions are challenged, but they can't move. The person who believes in a certain drug will fight to the end to stay on that drug. The one who puts his faith in alternative medicine is lost in that dogma. He'll "cleanse" himself into oblivion. Faced with a B-12 deficiency and severe anemia, he'll even refuse to eat meat because vegetarianism is "right." Death is the terminal stage of positionality.
We die of being "right," rather than accurate. Accuracy is not "right" but "right now."
What is needed is flexibility. Long-term HIV-positive survivors off the drugs are not immortal. Their situation is, as the article here states, complex and very different from other cases. The "reductionist" boiling-down to one or two factors is just not reality.
A person's positionality comes down to one or two essential attitudes when they face death. In AIDS patients down for the count, I have noticed that their basic position is one of victimhood. You can see this when someone goes into dementia. A friend of mine told me that his mother went psychotic at the end stage of her illness (not AIDS; she was 80 years old and had had a stroke). He said her expression of psychosis was to hallucinate about children running around. All the children, playing, having fun. It was the basic way she met the world, he said: in youth and playfulness and curiosity. AIDS dementia is often expressed as paranoia or victimhood. Suddenly, the patient starts talking about past violent crimes, theft and betrayal, for instance. My grandmother has Alzheimer's and fantasizes about many modes of proper family life, a sense of belonging to a group in a safe place. She was an orphan in Eastern Europe and didn't start from a safe place; she built one in America -- her basic position in life is the conflict between being orphaned and belonging. I sometimes joke that, in my case, psychosis would probably express itself as defiance. I would just throw things. Or I would survive by refusing some dangerous treatment, but die after refusing another one that really is lifesaving. Just out of stubborn orneriness.
The antidote for positionality is flexibility. It's being in the "now," considering, as this article does, every possibility as potentially valid. Shutting off possibility, knowing all the answers already, is not only unrealistic but death-promoting. It IS the disease, and it IS terminal.
,
January 11, 2010
|
-
- +1
-
-
Outstanding!
Carl,
I, much like yourself, watched friends waste away and die and those that carry on, a life without anti-HIV medicine. Perplexing is the human psychology perhaps, in that it's society's pressures of what a positive reaction on an HIV test actually means. How strong one's belief is western orthodoxy protocols are one thing, but in my opinion, that has less to do with it than what is laid out in one's psyche, i.e., that ever looming early demise and death from "HIV disease", not matter what one cares to believe.
Faced with a such a challenge, I would hope one can find the fortitude to focus on what one truly wants, but the really sad part is that life for most people with HIV, the focus instilled (or rather forced) into one's mind is quite the opposite. Difficult is it to undo the brain washing, but if one can succeed in doing so, the wisdom becomes profoundly apparent within the dissident camp, of which I am glad to be apart of. I'm eternally grateful you are too.
I, much like yourself, watched friends waste away and die and those that carry on, a life without anti-HIV medicine. Perplexing is the human psychology perhaps, in that it's society's pressures of what a positive reaction on an HIV test actually means. How strong one's belief is western orthodoxy protocols are one thing, but in my opinion, that has less to do with it than what is laid out in one's psyche, i.e., that ever looming early demise and death from "HIV disease", not matter what one cares to believe.
Faced with a such a challenge, I would hope one can find the fortitude to focus on what one truly wants, but the really sad part is that life for most people with HIV, the focus instilled (or rather forced) into one's mind is quite the opposite. Difficult is it to undo the brain washing, but if one can succeed in doing so, the wisdom becomes profoundly apparent within the dissident camp, of which I am glad to be apart of. I'm eternally grateful you are too.
,
January 12, 2010
|
-
- +0
-
-
...
Carl, thank you for writing such an eloquent and articulate summation of living thorough these last three decades of hell. Your words have clearly struck a tone with those of us who have had to walk through the midst of this travesty.
Thank you, Celia, for publishing this essay.
May all of us find our own voices, to be used as the only tools capable of bringing down the walls.
Thank you, Celia, for publishing this essay.
May all of us find our own voices, to be used as the only tools capable of bringing down the walls.
,
January 13, 2010
|
-
- +0
-
-
...
Yup. Perfectly phrased. No gold standards exist. Every "infection" is a singular battle. Heading into my twentieth meds free poz year - and still standing with plenty to spare.
And can we not all send one MILLION thanks to Farber for being such a tireless, TIRELESS warrior - from the beginning, through all nuances, battles, lost friendships (Maggiore), unfettered alliances (the prescient Duesberg) fierce in determination and spirit.and always providing a forum for the muffled voices of dissent.
And can we not all send one MILLION thanks to Farber for being such a tireless, TIRELESS warrior - from the beginning, through all nuances, battles, lost friendships (Maggiore), unfettered alliances (the prescient Duesberg) fierce in determination and spirit.and always providing a forum for the muffled voices of dissent.
,
January 15, 2010
-
- +0
-
-
