presentation given by Jon M. Greenberg at the VIII International Conference on AIDS in Amsterdam, 1992

I would like to put my biases on the line to begin with. As a PWA, after a fairly typical history of turning from one "answer" to another, from trust in one practitioner to trust in another practitioner, from belief in one type of therapy to belief in another type of therapy, I have finally come to the realization that the power to heal comes from within, not from without, that the source of this power is a larger universal spirit which only I can tap into for myself, no one else can do it for me, that whether I put my faith in Western Medicine or non-Western medicine it matters not because I am still putting my faith in something outside of me rather than within me, that whether I trust an infectious disease specialist from NYU to have the answers or a homeopathic doctor from West Germany to have the answers, makes no difference because such trust is misplaced if it means that I don't trust myself to have the answers. I believe that PWAs have an understanding of this condition and how to best live with it that no doctor who is not a PWA can begin to comprehend simply because he or she is not living with it inside his or her body; that by listening to my body I am also listening to this thing called AIDS and that consequently I understand it in a way that no person not living with AIDS can begin to understand it; and that sometimes the only way to begin to listen to one's own body and tap the knowledge within is to stop listening to everyone else outside.

As a footnote here, I would like to give an example of the difference between the points of view held by physicians who treat people with AIDS and some of the people who live with this condition, myself included. Many physicians look at this condition as a horrible plague upon the world, as a punishment, of sorts, inflicted upon those who out of ignorance were not aware of the consequences of their actions. That is a valid perspective for a person whose career is based upon a fundamental fight against death and pain.

As a person with AIDS who is learning the most wonderful lessons of his life through direct contact with pain and confrontation with death, this is not my perspective. AIDS is not a punishment to me but a gift and although I may not have been aware of the consequences of my actions when I was doing them (I don't believe anyone really ever is aware of the consequences of their actions, no matter how much we try to see into the future and control it) if I had to do it all again, if I had a choice, knowing that I would learn all that I have learned and that I would grow in the ways that I have grown and that my life would change in the ways that it has changed, well, quite frankly I believe that I would choose to do it all again.

That is my bias, and that is a personal truth that I have found only because I have finally begun to listen to my own voice, rather than the voices of hundreds of well-meaning but often very frightened health care providers from a variety of traditions.

So my remarks and the strategies I suggest to PWAs are based upon these biases and are intended to perhaps facilitate the process for other PWAs to find the keys they need themselves to tap the power they hold or channel within themselves.

When approaching treatment decisions, I believe that we have to ask some fundamental questions. If it is a substance which we ingest, we must ask:
1. How much do I take?
2. How often do I take it?
3. What are the possible side effects?
4. Will it work?
Leaving aside the question, for the moment, of what "work" means within the context of AIDS, these are the basic questions for substances which we put into our bodies. The questions are only slightly modified for techniques and manipulations of the body.

Obviously we can use a variety of methods to gather the answers to these questions. Exactly which methods we use and rely on to make our own individual treatment decisions is an individual decision. I am now at a point where I am pushing for controlled clinical studies of "alternative treatments" not because I really believe that this type of information is any more valid or reliable than any other type of information but rather because it is the type of information which the authorities who decide which treatments to pay for think is more valid and it is easier and faster and more expedient for me to speak their language than it is to force them to speak my language (which they clearly don't want to learn. So I push for controlled studies.

There is another reason, however, and that is this: reports from controlled clinical studies give me direct contact with the treatment option and I don't have to rely upon other people's stories to make my decisions--stories which are often colored by biases and histories I don't necessarily share and although they are completely valid for those who believe and promote them, and I in no way want to appear disrespectful to those who do so, simply because I am not them, I am different with a different history, emotional, psychological and intellectual make up, I cannot always trust for myself the reports of others. So for me, controlled clinical studies give me the opportunity to directly evaluate the treatment option from a set of fairly well-defined criteria to get the answers to those questions without needing to put too much faith in any individual practitioner or theory of disease and treatment.

I believe that each PWA needs to be her or his own doctor and getting to that point often means rejecting other doctors.

As a note to the doctors in this room, the best way to facilitate a PWAs self empowerment is by being honest with them. Quite frankly, controlled clinical studies tend to raise more questions than they answer, as do anecdotal reports, as do personal histories. Sharing your questions, your doubts, your criticisms, as well as your beliefs and trust in any particular therapy is the best way to facilitate a PWA taking the responsibility for him or herself to make his or her own treatment decisions. Leading a PWA to believe that you have the answer, when clearly there are none, (or an infinite number depending upon your perspective), may be serving as an obstacle to that PWAs self-empowerment because you are allowing him or her to put trust in something outside of him or herself. Take away the curtain of illusion and reveal the truth that there are only questions behind those doors, and you may reveal anger, disillusionment, pain and crisis, but these are also the first step in a person's path to self-reliance, enlightenment and self-empowerment.

Finally, a bit of personal history, because I believe other people's examples are sometimes the best way to learn. Being an AIDS activist I am in contact with a great many health care providers from many traditions. Some of them I utilize personally to help me facilitate my own treatment. I trust my providers. I don't trust them to have the answers. I don't trust them to agree with me. I trust them to love me as I love them which means that even when we believe completely different things, when I completely reject what they say, their diagnoses or treatment suggestion, I do not reject them; and that even when they think I am completely insane and losing touch with reality, (which they do with increasing frequency), they don't reject me and instead facilitate my getting the treatment I believe I need, even if they don't agree with it. I trust them to be who they are and be as honest with me as they can humanly be, and they, I believe, trust me in the same way. And fundamentally, I trust them to treat me with respect, love and equality and not with condescension, pity or fear. In that way, even if I were to choose my treatment strategies by tossing the I Ching, it would still be an act of self-empowerment and a valid healing technique because my trust in its process would come from within, would come from my instinct which is the truest manifestation of my own personal connection with a larger Universal Truth.

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see other Jon Greenberg documents:

ACT UP EXPLAINED by Jon Greenberg

Jon Greenberg Speech @ Mark Lowe Fisher Political Funeral

Political Funeral