COME SIT BY ME

The way I understand AIDS touches on many of my ideas about what makes the world and how it operates.  First of all, HIV-AIDS is a zoonose that comes to us from animals, across species, which has been happening always but accelerated when we domesticated animals.  The plague that killed one third of the population of Europe was a zoonose.  The smallpox plague that wiped out most of the indigenous population of North America was a zoonose, as was the cowpox that supplied the first vaccine.

  

Second, HIV-AIDS is a retrovirus, which is to say it is a mirror of DNA, the template for the code of DNA.  We know enough to control HIV IF the person has the stamina and resources to take a complex schedule of drugs and IF the person is willing to undertake the close monitoring necessary to calibrate results.  Taking pills by the dozens at exactly the right intervals and in exactly the right amounts is not easy -- especially when manufacturers don’t make or distribute enough pills of the right kinds.  Presenting oneself at regular intervals, mere days apart, to have blood, urine, saliva and so on sampled for testing is wearing and depersonalizing.  Side effects of the pills mean nausea, byproducts of the needles and cut-downs are infections, and byproducts of being run through unpleasant repetitions is deep revulsion.  It also interferes with holding a job.  There is always the danger of a bad reaction to a drug, some near deadly.

Third, HIV-AIDS can select specific kinds of  human defense cells, enter them, and add its genetic code to the code already in the nucleus of that kind of cell.  (We can do that, too.)  At present, to be immune to HIV, a person needs two copies of a certain gene which we can identify.  Some people have only one copy so the early efforts are to add the second gene copy to people who already have one.  Also, at present the strategy that cured the first patient is underway both in cancer research and in HIV-AIDS research.  In fact, the patient had cancer and underwent a bone marrow transplant -- ALL his white cells were killed and then new ones that carried both protective genes were added back to his bone marrow.  This is a technique used in desperate situations but it is not impossible.  The doc thought that since he was adding back someone’s marrow, he would simply use that of a person who had natural immunity to HIV-AIDS.

There are cancers that are due to malfunctions in single or maybe two interacting genes.  Before curative genes can be inserted, their genomes are mapped thirty times to make sure they are exact maps.  So much data is involved that it cannot be sent on the Internet but rather in packaged hard drives via UPS.  Then the EXACT gene is changed.  In one person this worked; in another it did not.  The different results have an unknown cause.  This is MORE difficult that the bone marrow transplant that carries the immunity to HIV-AIDS.

Fourth, HIV-AIDS responds to cultural memes of sexual behavior, drug behavior (both illegal and prescription), the way we move around the planet, the way we allocate resources, and the dynamics of stigma.  This is where the real problem lies.  We’ve known for a long time how to cure the tuberculosis which decimated so many people in the 19th century, but we still haven’t managed to do it.  Starvation is not even a disease but we still haven’t mastered it.

Fifth, when we can manage HIV-AIDS, we will have made a huge jump to the management of all genetically based diseases.  This will include cancer, Alzheimers, Parkinsons, and so on.  It will also mean figuring out the genetic configurations that allow a drug to be deadly for one person and salvation for the next.

But the bottom line and the one that hurts the most is the yearning for emotional intimacy and authentic witnessing for the people who are struggling with HIV-AIDS.  No matter how they got it, no matter how well they cope with it, there are going to be moments of anguish.  Docs and moms may try to respond,  But what has been most deeply moving is men helping men.

There are battlefield photos of men helping their wounded buddies, cradling their heads, looking into their eyes.  We honor them and are very much moved by them.  But there are not many photos of men cradling their lovers and friends who are dying of AIDS, though it did happen.  There are not many mainstream photos of men bringing tunafish casseroles and and coaxing other men to eat as though they were sons.   

But the impact on the larger society has been felt.  A generation of men learned how to take care of each other without ceasing to be men.  Even the bearded, burly “bears” learned how to change sheets and give bed baths.  Because the shame of male-on-male sex was nothing compared to the shame of lying in one’s own excrement, too weak to do anything about it.   Those who had enjoyed each other’s hot resilient flesh now watched it turn gray and skeletal.  Men as limp-wristed fairies had to be revised to men strong enough to lift each other, even if it was in a coffin.

In some ways, where we are now is less dramatic and harder.  Taking dozens of pills daily in exactly the right order and amounts, then going to a clinic weekly to have overstressed people hurry through tests so as to serve as many clients as possible, requires a very strong grip on the life force.  It is combat, it is a frontier, and it cannot be reduced to statistics in a truly meaningful way that will draw necessary funding.  We’d rather pay for predator drones because the only lives risked are those of people we don’t much care about.  I mean, care about even less than AIDS patients.

If I had a camera and were there, I would show you Tim dealing with a boy in a state of revolt, refusing the pills that keep him alive.  Tim sat down alongside the boy, the marching rows of pill bottles before them on the table, and said,  “I will come to you and hand you your meds myself and be with you while you take them.”   It worked.  The boy is still alive, I think.  How can we do less than that for him and all the others?