The emotional push and pull that results from being infected with the AIDS virus certainly puts you through the changes. One of my most difficult personal struggles is trying to reach an equilibrium between two superficially conflicting view points. On the one hand I feel like a passive victim of a virus that will kill me sooner or later and on the other is an egocentric white middle class male who thinks he has total control over the situation as the creator of his illness. There is a belief that illness is a creation of one's own mind and this stands in opposition to the belief that "the handwriting is on the wall". I view both extremes as possible forms of dangerous denial.
There is a current school of thought prominent in "alternative, holistic and natural" health circles that at times communicates the implication that not only are we responsible for our own health but that we are the creators of our own illnesses. AIDS from this perspective is the result of "allowing" this retrovirus to make us ill. I can't appreciate any difference between this position and the view the religious right (and probably much of the massive middle) has of AIDS which is that it is the just reward for a life of sin and depravity. So what is the difference between one who "creates" an illness and one who is to "blame" for it?
Dana Ullman, Director of Homeopathic Education Services in Berkeley, California, has labeled the holistic health movement's tenet that we are totally responsible for our own health as "wellness macho". In an article recently appearing in the Utne Reader Ullman says:
Gay men, in general, have already taken great responsibility in the AIDS crisis. This is dramatically represented by the very real and easily documented changes in sexual lifestyle, clearly indicated, by the plummeting rates of sexually transmitted diseases and the near zero rate of HIV seroconversion (new AIDS virus infections) at least among the liberation generation now 35 to 55 years of age.
A statement by Jesse Jackson quoted in Ullman's article says "you may not be responsible for being down, but you are responsible for getting up." This strikes the balance needed between "helpless victim" and "creator of illness" and helps give that balance definition.
A study of long term survivors of AIDS being conducted by Michael Callen shows that one of several things that seems to distinguish these individuals is an assertive management of their illness by themselves. It is a management style that makes use of numerous modalities ranging from allopathic to naturapathic. AIDS has certainly knocked us to our knees and we are now responsible for getting up. Once you've grasped the reality that it's not bad and it's not a sign of failure to be infected with the AIDS virus, and that even if this progresses to "full blown AIDS" it is not a negative statement about your inherent self-worth, you are ready to get up. "Getting up" is probably best viewed not as 'curing' yourself but rather as movement toward regaining the power needed to deal with the whole situation.
Begin by reclaiming power you may have given to "substances" or "other persons". Giving power to sometimes hard to get substances is the current rage whether the substance be AZT, AL721, Shitake mushrooms, dextran sulfate, naltraxone, penicillin, etc. The use of antiviral and immune system boosting agents is an important component of managing HIV infection and will only increase in importance in the future, but don't put all your eggs in one pill box! The best response to HIV infection will most certainly be a broad and multifaceted approach and a pill may be an integral part of this but it should never be the whole show. You abdicate responsibility and control when you try to let a pill do it all. Again, reclaim the control and management of your situation.
Allopathic medicine and it's practitioners must take significant responsibility for the evolution of a powerless mentality around illness in this country. An illusion has been created that the relatively good health and longevity (compared to much of the world population) we enjoy in this country are somehow due to the astute management of illness through chemistry. There is always a pill available that will make you better or at least get you out of the doctor's office thinking that you've been fixed. I would venture to say that the relatively long and healthy lives we enjoy in America are more the result of historical privilege and not so much the result of masterful manipulation of medication.
On days when I experience major anxiety attacks about my own mortality there is nothing more I'd like than for someone to come along and tell me the "right" thing to do. It's a scary realization that the "someone" is myself.
It takes much more work and energy to remain the manager of your own HIV infection and not turn that over to the person who writes the AZT prescription or the person selling the crystals. (And this is not to say that you may not want to keep a crystal or two in your AZT bottle.)
We are rapidly moving toward HIV infection being managed as a chronic condition and already dated constructs such as AIDS will no longer be the inevitable outcome. I'm convinced that those of us who will do the best (best does not necessarily mean "live the longest") will be assertive managers of our own HIV infections and not helpless victims or egocentric creators/eliminators of it.
Take charge. Take control. Be responsible.
Be well !!!