THE RIGHT TO RAGE

Rebecca Ruiz

I read an interesting piece by Rebecca Ruiz on Aeon.com the other day.  It was called  “The 12-Step Dogma” and was an inquiry into whether "Higher Powers" and group support were still valid in this day and age when we know so much more about how brains and addiction really work in the body, molecularly, and have meds that can sometimes compensate. Here’s a quote:

“Some argue that AA offers just that opportunity [a way to sobriety], with its steps, affirmations and peer support. Back in that sunlit room in Berkeley, surrounded by recovering addicts who share testimony about the salvation of AA, I can see their path to redemption. The suffering in the room feels like the movement of a wave – that moment when the ocean’s water is pulled back into the abyss and the sand disintegrates beneath your feet. The hour-long ritual of sharing and grieving and lamenting is a way of resisting the void, of pushing it back so that it doesn’t consume you again. With newer therapies so emergent, with research ongoing and trials incomplete, this seems a proper way.”

Lord Varus (Conleth Hill)

The Rev. Mark Belletini

The next thing I happened to pick up off my “to read” pile was the Spring 2015 issue of the UU World.  In it was an excerpt from Mark Belletini’s “Nothing Gold Can Stay: the Colors of Grief.”  http://www.uuworld.org/spirit/articles/300862.shtml  I know Mark only distantly as a musician, liturgist, and respected preacher, but I did know about his sexual identity.  He's quite frank.  He always reminds me a bit of “Lord Varus” from Game of Thrones, but he is not a eunuch or a schemer -- just wise, stable, quiet -- and gay.  

In the Eighties the UUA already had a number of “out” gays.  The Rev. Mark Mosher DeWolfe, who was serving a UU congregation in Mississaugua, Canada, worked with me to line out a theology of the landscape before he died of AIDS.

The Rev. Tony Larsen

The Rev. Dr. Tony Larsen has been the minister of Olympia Brown Unitarian Universalist Church in Racine, Wisconsin, since 1975. He was born in South San Francisco, California, in 1949; studied to be a Catholic priest for ten years; and was ordained a UU minister in 1975. He is not afraid of a little action.  In fact, he said, “Because the first criterion for getting into this church is: you've got to know how to sin. That's very important to us; and not everyone knows how to do it. We don't want people here who never do wicked things. We don't want people here who are holier than thee or thou. We don't want people who have made it in the salvation department and are just waiting around to get picked up. Because people with too much heaven in them are hell to live with.“

Belletini is not so much the provocateur.  Here’s a bit of his story:

“I lived in the San Francisco Bay Area for twenty-four years. In 1981 I remember reading the New York Times thoroughly one summer day as I rode the subway. Somewhere way in the back pages I saw an article reporting that a number of young men were suffering from Kaposi’s sarcoma, a rare cancer usually found only in older men with Mediter-ranean heritage. The only thing those young men had in common was same-gender sexual activity. I clearly remember actually saying aloud in the crowded subway car, “Now what?” . . .

“Over the next decade, I lost friend after friend after friend. When my best friend, Stephen, told me that he had tested positive for HIV, I kept my feelings within me as he talked and I listened. After all, others were in the room when he called. Then when we ended the phone conversation, I went into my room, closed the door, and threw myself onto my pillow and sobbed bitterly. In those days, before the medications available now, such news almost always meant an early death.

“I officiated at the memorial services for many friends. When Stephen died, I fell apart for a good long time. Nothing was right about the world. . . I feel like I have been weary to the bone for almost two decades. Memorials almost every weekend. Not a day went by when I didn’t open the newspaper and see the face of someone I used to know—and often cared about—in the obituaries. I just shut down so many parts of my soul. I feel like I am recovering and opening my soul so that it once again can move through the world with openness and gratitude.” . . .

“Grief has often worn me out, while restoring me to myself at the same time. But the one does not seem to come without the other.”

In another place Belletini told about the years in SF when he lived in a loft that had been divided into apartments.  For many years he belonged to a drawing group.  He stacked his drawings together, a major accumulation on big paper.  Then one day the plumbing broke and cascading water from the floor above made all the paper into a solid block of papier maché.  He had to work on that loss for quite a while before he came to terms with it.  Excellent sermon material because most people can identify with the process of loss, recovery, reconciliation.  It's an old Christian template.  We are all so invested in healing, harmony, overcoming obstacles and so on.

But I know another guy who is gay who is not a UU minister (you have to be a college grad and he’s an autodidact -- the difference is paperwork) but spends every day of his life, every moment of the day, in ministry to at-risk boys, the ones so crazy, defiant and sometimes needy that no one else will take them.  His armor is rage.  Theirs, too, though they tend to grow out of it.  He never has.  He goes back to the molten source, extreme abuse in his childhood, and refills his gut over and over.  But also, like Belletini, he learned how to nurse the dying, make casseroles, change bedding and just sit there, during the terrible genocide of gay deaths. 

Anyone will tell you rage is bad for your health and it has been.  He’s in constant pain.  Painting, photography and other art projects have sustained him all his adult life, but also the kids.  It’s not all dramatic Robin-Williams-type breakthrough moments.  These kids have HIV or even AIDS and that means housekeeping: constant laundry, careful dishwashing, diligent household maintenance, good diet -- because HIV, even on all the drugs, makes a person vulnerable to every infection that comes along.  Even mosquito bites are worse for HIV people.  Serious flu can flatten them.  I can’t think of a Game of Thrones character who fits him.  Someone from the North.

The rage works.  It fuels him and the kids through their weekly insulting and painful public clinic visits, which they endure only because it is the price of staying alive.  It’s the prod that makes him invent one money-raising device after another even after all his beneficiaries are exhausted.  And to constantly rage about the lack of a cure, the fading of consciousness.  It makes enough space in him that when one of the kids is sick or hurt, he can go to sit by them in the hospital, holding their hand.  He survives, a lot more of the kids survive than would without him, but he don’t get no respect.  He doesn’t fit the image.  Why should he?  But cultures have no mercy.

When Dragons grow up.

My rage is not like his.  I smolder.  I lay low and scope the territory.  I keep lists.  Mark, Tony, and the other Mark are institutionalists.  But I’m finding that system to be mostly paper, all wet.  I’d rather burn.  I’m on the side of the guerrilla dragons, inconsolable.   Resisting the void. 

AT THE RISK OF MY BLOG. . .

Do not read this unless you think Google will approve.

On August 2, 2013, I wrote a blog called “What’s So Bad About Rape?”  The main illustration was a Dolce and Gabbana advertisement of a man holding a woman down while three men stood by watching, possibly waiting.  There was a certain amount of nudity but everyone was “pretty.”  The other images were not quite so suggestive, though there was one in which a man was being restrained by a crowd of men.

This was my pay-off bottom line:

RAPE IS ONLY ONE WAY -- ALBEIT ONE OF THE MOST POWERFUL AND DESTRUCTIVE WAYS -- TO INVADE THE INTIMACY OF ANOTHER HUMAN BEING, BECAUSE IT REMOVES MEANING, WHICH IS VITAL TO SURVIVAL.

So just recently a commenter asked me why the media thinks that a woman being thrown down and raped in an alley by a stranger is worse than a man being thrown down in the same alley, beaten into critical condition, knifed, paralyzed for life, etc.  The person doesn’t ask for a pure moral judgment but asks a straightforward question about the way people react.  The commenter does not seem to realize that a man can be raped or that a raped woman might also be beaten, knifed, paralyzed etc.  But that’s not what he asked -- he asked about the way the media differently weights the two events.

The post was essentially a list.  Part of it came from a friend who counsels violent rapists in prison: not to make them feel better about it, but to help them figure out what inner maelstrom or arrogance is motivating them so they’ll stop.  I’ll make another list.

First, I want to note that this inquirer is not gender-identified, age-identified, or, let’s say, “education-identified.”  Following are things to think about.

1.  Either males or females can be raped.  Physiology for both requires lubrication.  Rapists do not normally carry K-Y jelly.  Rape without lube means torn flesh. Rape is access to viscera which are vulnerable.

2.  Raped men can be aroused as easily as raped women.  It is a deep reflex, unconscious, not related to pleasure, often related to violence and death.

3.  All rapes are by definition violent and unwanted.  In a culture defined by pride in one’s individual flesh and immediate space, it is not just physical and not just moral, but also a sanity invasion, forcing the surrender of personal identity.  The brain and nervous system is deeply confused, scrambled, traumatized esp. in an inexperienced person, which is why the idea of raping nuns and children is powerful.  Not just a physical event or even a destruction of innocence, but an attempt to destroy what makes us human.  (For the rapist as well, but they don’t get that.)

4.  Rape is a formally defined war and terrorism weapon.  It is dominance behavior.  War is arousing.  Part of the arousal is terror, contempt, rage.  Playing rape for the sake of arousal is often defended if it is done with consent, but it’s risky business in more than one way.

5.  Part of the confusion about rape is that “statutory rape” is possibly with consent and even real desire, so it’s wanted coitus.  What’s the problem? One is the possibility of conception if it is a female being raped, which is a physical burden she will have to carry as well as a psychological problem as well as a social problem she will have to manage: like how to get a good education, where to find the money for a baby, managing stigma.  In many states if she wants an abortion she will have to find the money to travel to a clinic, maybe a long ways, because there are some people who believe that punishment makes problems disappear.  All for “love.”  In some countries the problem of dealing with a rape victim is solved by killing the victim.  Her family does it.

6. HIV/AIDS is not equivalent to pregnancy.  It cannot be aborted.  It will be far far more expensive than birthing and raising a child.  HIV/AIDS will be contagious.  For the rest of one’s life it means a formal regime that will only keep one healthy with medication IF a schedule is followed, one that means weekly travel which -- in a northern climate in a remote place -- can be life-threatening in itself, requiring constant medical monitoring and invasion, that is simply unpleasant --  the meds are not exactly aspirin.  Only one-third of people in any circumstances who have this disease will have the self-discipline and determination to follow the regime.  But that’s no different from, say, diabetes or the tissue-rejection meds after a transplant.

7.  Self-discipline is a skill.  It is not a moral issue nor a psychological issue -- which it becomes in our authority-defiant society -- but a learned self-management that cannot be acquired from authority-figures imposing monitoring like a parent making you get up in the morning or do your homework.

8.  Historically women and children were “owned” by men the same as if they were horses.  They were domestic animals.  Their labor, their bodies, their ability to produce more humans which would add to the man’s wealth, all belonged to the man.  This conviction still persists and may be part of the reason men rape their own children.  They think they are entitled by ownership.  The women and children “belong” to them and therefore must obey them the same as a horse would have to.  Since rape is a benefit of owning someone, then a stranger who “uses” them is the same as a thief stealing money.  It’s interesting that often the most prudish men are the ones who find money the highest value in their practical lives.  Not sex.

9.  Until recently matters involving sex were hushed up by newspapers.  Now that the internet has enlightened us, the other media can also finally let us know the particulars, the proper terms, and the estimated pervasiveness of problems.  As when Kinsey discovered “men having sex with men” and even homosexual intercourse in stable relationships, we are hearing statistics like 20%, one in three, and even higher figures about sexually abused children, physically invaded women -- so common and accepted that people like Joe Biden and George Bush don’t hesitate to put their hands on women at public, high status, formal, diplomatically significant events monitored by cameras, microphones, and many attendants.  The conclusion has to be that keeping everything secret did NOT persuade people not to put beans up other people’s noses.  Rather it seems to have taught them that everything is as innocent as the ball pit at McDonalds.  But ignorance is not even good for children, who must be taught to keep balls where they belong.

10.  This does not exhaust the topic but it exhausts the writer.  I have a strong suspicion that Google is pursuing what I’ll call the Obama boomerang strategy.  When you are constantly criticized for something hard to defend but which yields a nice profit, if you comply with whatever it is that the controllers want to control, the calculated outcry from the other side may intensify so much that they will provide all the arguments and ammunition that would be useless if they came from you.  Pretty soon the critics will be overwhelmed and have to withdraw.  I certainly hope that’s the case with this sudden moral turn Google has taken.

Oh, and what about Wikipedia?  Isn’t that our marker for what the People know?  Think of something sexual so extreme you don’t know what the term for it means, look on Wikipedia and you’re likely to find a detailed description and a photo.  

And isn’t censorship a form of rape in the sense of wanting to own for profit, take identity where it doesn’t want to go?

FRAGMENTS

SCATTERED THOUGHTS not worth a whole blog.  At least now.  Maybe.

Every major problem is connected to so many other sub-components and peripherals that it’s impossible to consider them all.  Therefore, necessarily, one has to grab the situation where it’s possible  (the first decision is figuring that out), do something (what CAN you do?), and see what happens.  (Pay close attention.)  This is true of everything: priests who abuse kids, global warming, diabetic diet, how to manage cats, writing blogs.

Helping is so much complicated by the problem of WHO is being helped?  Does defining yourself as a helper help you yourself?  Are you crushing and dominating?  Are you turning away from help or helping?  Are you losing boundaries?

What IS sexual molestation anyway?  Full-on rape or physical damage or invasion is obvious.  What about hugs that are a little too tight, that last a little too long?  What about resting a hand on a shoulder, squeezing or pushing?  When I was in high school, men on crowded buses used to covertly pat me on the bottom.  Was that abuse?   I have never worked in any office where no man ever swatted me on the bottom with a file folder.  Is that abuse?  (I tried it once: patted a man on his bottom.  He didn’t notice.  Must’ve had something in his hip pocket.  I didn’t get any buzz out of it.)

Sometimes there is no way to help.  Not to dramatize frustration, but it does seem like a secondary effect of the original bad thing one is trying to help, a derived trauma.  Witnessing and testifying are two practical responses, but where does a person find the strength and focus to do that except by loving the suffering person, and what if the victims just won’t allow that?  What if they feel compromised by it?

Once in a while the consciousness-raising about some issue becomes unbearable.  One can feel like a fool for being so wrong, so disconnected, such a child.  What do you do with those kinds of feelings?  They seem wormy, illegitimate, unworthy -- when feeling worthy is one of the motivations of helping the stigmatized in the first place.

People just wear out and there’s nothing to do about it.  Might be age, might be dialysis, might be cancer treatment, might be drugs, might be emotional erosion.  Let them go?  Yeah, I think let them go.  But how to bear it?

Over and over, no matter what the issue, Native Americans are rarely noted.  They come somewhere after “Asians.”  Some people will insist that everyone born on the American continents are "Native" Americans.  So I try to remember to say “indigenous” but half the Blackfeet tribe lives off the rez, usually in big cities.  Are they indigenous?  Autochthonous?  Aboriginal?  (They use that word in Canada and Australia.)  Mostly, unless they have feathers and braids, no one notices them.

Why do I keep messing around in all this drama and trauma?  To witness the occasional brilliance and courage of victims seems important, but am I just making myself feel important and “sensitive?”   What good does it do them?  Am I just escaping boredom?

So much hinges on the quality of the writing I produce, but judging the quality of writing is a very elusive thing.  It happens in the space between two people which is something impalpable, real as it is.  It’s kind of a vibe, a music.  

This new fashionable public dynamic of demanding to know the real truth about writing or data or international diplomacy or whatever baffles me.  (Example: “Three Cups of Tea.”) It seems to be an upper-middle-class entitlement -- or so they think -- and closely related to consumerism:  is this good value for my money, is this medicine effective, will this battery give me the amount of time listed for it?  A constant wariness and a willingness to severely punish, an evident enjoyment of the whole law process as though life were a police procedural.   So much is trivia, like sitting in a movie and criticizing the cowboy gear as not right for the period.

I don’t say much about HIV-AIDS.  This is not because I don’t care but because I’m not exactly qualified to have an opinion.  For years now I’ve watched and listened from a distance to a community far, far away.    People I grew to know and love have died.  Well, they have around here, too.  Those faraway people are boys and young men.  So are the ones around here.  The ones around here usually die of violence and drinking, not AIDS.  In the end it’s sort of the same thing.  If they were bovine, they’d be made steers for steaks.  We eat them.  It seems to be a domesticating thing, an editing, that used to be imposed by the wild natural forces against hunters and warriors.  They are extra bees, unnecessary once the queen is inseminated.  No wonder they hate and fear females.

But that’s bullshit.  Male humans after they have started an infant are still needed to guide, protect and nourish mother and child.  They need to love him.  Anyway, a human being who is 21 is on the verge of a new kind of birth: the ability to be an instrument in the great cultural symphony of civilization, the architecture of living beings.  To abort a young man at that age is as much a crime as to abort a fetus. 

http://www.michaelmacklive.com   This is about a play devised from real life sexual abuse -- a dialogue between the real life victim and the real abusing priest.  So this guy is brilliant, educated, able to find financing for shows, and he has the contacts to get good reviews, and etc.   Why is the audience applauding and praising such a production?   What good is it to the rez kid out on the fringes of nobody-wants-you?  Can I even imagine one of our street people going to one of our priests who molested him long ago (assuming there was such an event, such a person) and demanding to discuss it onstage?  Um.  Yeah, I think I can!  What would be the consequences?   I can’t imagine.

Is there any place at all for the earnest person who wants to at least TRY to be ideal?  Can anyone get past the attempts to DEFINE the ideal?  Probably not.  But somehow, bad as it is to send young people into war, it seems to me worse to let them drift into meaninglessness simply because there is no mitigation, no place to rest except streets, no families except gangs, no treatment for injury and illness acquired from being “in harm’s way”.  

Still -- though there’s no comfort in this thought for the bipolar sufferers -- there cannot be highs without lows, there cannot be birth without death, there cannot be food without shit, and life is a constant process of going up and down, side-to-side, testing the limits of the process that is “living.”  Unless a maturing person acknowledges both sides of that boundary -- both the stream of life and the stone shore of death --  they can’t find the meaning they need. Sometimes the real heroism of life is the steady, wearing-down treadmill of day-to-day interaction with oneself and others.  You know -- matching socks. 

So I write a lot.

ONE SMALL BOY ALONE IN THE HOSPITAL

• Tim Barrus: Health Care is More Than Surgery
• Chase had open heart surgery.
• I walked into his hospital room today, and the smell was explosive. Reeling, I had to leave the room, swallow, and go back again.
• I am at the moment sitting in my jeep outside a hospital supply store.
• In a minute, I will be going into the store to buy stuff so I can return to the hospital to bathe the kid.
• He smells really bad.
• And I am really pissed off.
• All the high tech surgery in the world, and they can’t keep the kid clean. Rather than even try to keep Chase clean, they would pump him full of antibiotics to prevent infection. This is health care in America. The fucking thing sucks.
• It would take too much time to clean him.
• And they won’t listen. After all, they’re the professionals. I am only an annoying, complaining bitch they’d rather not listen to.
• What smell.
• The one in his room. The one that is directly related to the infected bedsores he now has.
• They don’t give a fuck.
• Where is my sword.

Mary Scriver:  What I know

Now and then an individual personal case that no one would normally ever know about becomes a living -- and suffering -- illustration of universal forces that need to be confronted.  Here’s the thing:  Chase had open-heart surgery.  Now his health is endangered because he has not been washed and has developed bed sores.  They are infected.  Luckily, Tim has -- African-style -- personally bought supplies, washed the boy, and demanded better care.  Why should WE care?

PANDEMICS:  People were happy to hear soothing news about AIDS from the recent conference.  What is not grasped is that HIV-AIDS is not a “stand-alone” sort of affliction.  It is by definition an inability to defend oneself against the things the immune system is meant to resolve, the daily little problems of bad colds, fungus, skin problems, small traumas and large (broken bones), food poisoning and other environmental hazards.  It is a disease that comes from and confines the victims to a lifestyle ghetto that exposes them to TB, hepatitis, STD’s, malnutrition, injected drugs.  This forms a reservoir that not only overwhelms the individual but constantly leaks contagious diseases into the rest of the world.  This is especially insidious since “respectable” people are in the habit of visiting this reservoir for their secret needs, thereby becoming vectors to their own families.  This vector’s use of people trapped by stigma suggests the reason the reservoir is not really addressed and resolved -- it that the users WANT it and block remedies.

IATROGENIC MEDICINE:  Another thing not addressed publicly is the danger of the potent medicines used to treat HIV-AIDS.  The number of coronary incidents involving patients in their early teen years, otherwise functioning well and keeping their blood titers under control, is a clear signal that the meds are the problem.  Curing one affliction by imposing another is not acceptable medicine.

STIGMA:   When I did my hospital chaplaincy, I found that nurses ran the wards according to their own moral principles which tended to be conservative.  They were cheerfully responsive to people like their own relatives, especially old people, but they would not even let me visit a young woman with genital herpes though her cries of distress were heard in the hall.  Plainly they felt she deserved to suffer. They stigmatized her.  And they interpreted my services as excusing and rewarding.

But there is another problem with stigma:  our culture stimatizes those who do low-pay service work, especially cleaning, and exclude people from other countries who are not accustomed to that stigma.  What’s more, the hospital management, thinking little of the humanity of their low-pay workers, cuts positions while tightening up and expanding work loads.  The people who do the basic cleaning of rooms and patients are in this category of overloaded, underpaid workers and carry with them constant resentfulness and the need to punish someone else who is even less able to defend himself, like a boy with recent surgery.

INFECTIOUS HOSPITALS:  A great outcry has been raised about the explosion of MRSA and “flesh-eating” infections from hospitals, esp. those “out of the commercial loop” like VA and Indian Health Service hospitals.  It has been asserted over and over that simple conscientious use of soap and water is the best prevention.  We are constantly creating antibiotic resistant microbes.  They tell us we are short of jobs, that we are converting to a service economy, and yet paying for the simple service of bathing seems beyond us.  Again, this is not about one boy in hospital, because his care is directly DIRECTLY connected to the care we all get.  (You can believe that the management of that hospital works in nice clean offices where they don’t need to worry about getting their clothes dirty.)

COMMUNITY SCAPEGOATING:  Most of us, in high school, read Shirley Jackson’s chilling sci-fi story about stoning, scapegoating, “The Lottery”.  And yet the message doesn’t get home.  We are still scapegoating certain populations -- like street boys, sex workers, and the defiant who try to protect them.   We let them die, sacrifice them to the Gods of Greed we worship, let honor be gagged in the name of respectability.   We have the irrational belief that the neglect and suffering of one boy, unknown, in a mismanaged hospital somewhere else, has nothing to do with us, but let me assure you as a former hospital chaplain and as a former nursing home ward clerk, if that boy Tim bathed is neglected, the same forces are at work in your own hospital where your own neighborhood sons and nephews and students are sent.  And you. 

BIG MONEY:  Today’s hospitals are run for profit, the same as our prisons.  Sometimes it’s hard to see the difference.  Open heart surgery is a high-profit enterprise that means high salaries and high prestige for the surgeon or even for the surgical staff.  That doesn’t even count the cost of the machinery and supplies for such an operation.  

But ordinary bed care, which used to be supervised and done by nuns with centuries of tradition and clear religious rewards regardless of society, is just not there.  Even in the local rural nursing home, my neighbor quit her nurses’ aide position (which she needed) when she found a wheelchair encrusted with feces from a previous patient.  It had been put away without cleaning.   Management said it was helpless, though it had imposed a rigorous hand-washing workshop that even the clerks had to attend.  It was evidently just a check list item for insurance and evaluation.

On the one hand we have an almost phobic devotion to antibacterial wipes before touching the handles on a supermarket shopping cart.  On the other hand we let excrement soak into defenseless people’s beds.  It’s arguably more dangerous than drunk driving, smoking or guns -- but we never discuss it.  The difference is money.  There is no money in ordinary bed care.  We pretend it is isolated in the hospital, but it is not.

HOW TO TURN THE TIDE:  Involve surgeons.  They want good outcomes.  Honor low-pay, low-status workers when they do a good job.  Do not let hospitals and nursing homes to be closed and barricaded.  Go walk through, maybe as a citizen project.  Don’t forget to visit elders.  Phone calls won’t do.  They’ll tell you anything to get you off the line.  Take a camera.

In addition, for this boy, those men who survived the original waves of HIV-AIDS and learned to nurse by helping lovers to die -- few as the survivors are now -- need to step up.

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?

ROBERT JAMES FRASCINO, M.D.

On Saturday, September 17, 2011, there was a death that has gone entirely unnoticed by the press, or maybe they know but decline to report it.  I wouldn’t know myself except that I subscribe to TheBody.com, which is a source of information about the management of HIV-AIDS.  I do this because I was writing with a group of boys with HIV.  No panic: they are in Europe and on the East Coast.  And, since you asked, since 2007 their care has improved enough that they’ve stopped dying so much.  

I do NOT have HIV.  I have diabetic metabolic syndrome (mostly because I’m 72), and I write about sex as a nonparticipant (in the contact sense).  I am not gay -- I’m solitary and celibate.  Viruses are part of our global environment.  Hanta Virus, West Nile Virus, rabies -- they’re right here in Montana.  HIV-AIDS has had an impact on the arts only matched by tuberculosis in the 19th century or smallpox among the Native Americans a little earlier.  I’m old enough to remember the polio epidemic, which was deeply sympathetic to most people because it struck kids and a president.

Robert James Frascino, M.D. was a prize-winning concert pianist as well as a specialist in fatigue, anemia, rheumatology, and immunology.  These are slippery vague afflictions that seem pretty widespread (unlike HIV in Montana, which is probably exceeded by Hepatitis C, another deadly virus).  The cutting edge research is on the molecular and sometimes atomic level, deep in the machinery of the cell.  When the cure for AIDS is discovered (and it only lacks money and a few lucky break-throughs) it will be a “convergent” cure for many other diseases as well, possibly even cancer and diabetes.  The research is that basic.  

“Dr. Bob” was gay, married to another male doc for 18 years, and acquired the virus in 1991 when a blood sample in a biopsy needle was accidently driven into his hand.  He died from bacterial sepsis, aged 59.  AIDS is a disease of vulnerability, but they are saying the “blood poisoning” was not from the virus.  People die from bacterial sepsis in major numbers.  They say in the US, there are more MRSA (antibiotic resistant infection) deaths than AIDS deaths.  You don’t catch MRSA from sex -- you catch it in the hospital.  

Dr. Bob’s first response to HIV infection was to start a series of benefit concerts.  His second was to begin answering questions in a Forum on TheBody.com.  Even I read all the questions (some of them so crazy off-the-wall that most people would have just thrown them out) in part because HIV is as much an environmental issue as, say, grizzly bears, and in part because he was so full of tender and funny common sense.  HIV-AIDS is almost as much a mental disease as a virus.  People get so paranoid and denying about it that they think they’ve caught it from walking past men in pharmacies who look effeminate and part their hair on the wrong side.  When there was a contest for the funniest and most out-there question to the forum, it was hard to choose.

Dr. Bob was consoling.  But funny.  “Really,” he assured the questioner, “You are not the only person who has had sex with a Republican bisexual transgendered Mormon midget with webbed feet wearing a strap-on.”  His main casualty was political correctness, but people who are desperate for truly scientific advice relevant to their problem tend to be so paranoid about where they got the virus and so likely to blame those they believe hate them, that only jokes could carry the info into their brains.  (Anyway, you can tell the category Dr. Bob describes here -- the marker is that they’re all running for Congress.  That’s a joke.)  The questions and answers are still posted on TheBody.com, if you’re not too paranoid about your computer being hacked to go read them.

My issue, my focus (which is hard to pick out) is not AIDS or viruses.  I am a “whole-ist,” an “everythingist.”  What I see is a world of woven forces that travel through each other, morphing as they go, forming patterns that we mistake for permanent realities, and always creating stories.  It’s overwhelming to think about.  One hardly knows where to start except that the general rule in life is to start where you are, to hone your own perceptions and attitudes into instruments of perception.

I want to leave you laughing.  Here’s Dr. Bob’s answer to a seasonal question.  You can figure out the question:

“You haven't seen a question that discussed worms growing in the vagina after masturbating with a zucchini??? Gee, I wonder why.

"First off, can I ask why you decided to go all the way with Mr. Zucchini? Did you get bored and/or horny while shopping in the fresh produce aisle at Whole Foods?

"Your worries about worms in your vajayjay after your sex date with the squash are unwarranted.

"Next, you wonder why after your vegetable love-fest your nether regions were a bit sore. Hmm. Sweetie, you shoved a zucchini up your serpent socket. Don't you think that might account for the discomfort?"

I’m guessing this is probably not among the countless zucchini jokes one hears this time of year.  And I’m not resisting the use of the word “interpenetration” very much, or asking the age of this adventurer, but it is pretty typical of the questions that can torment young people in particular and much safer than trolling the bus terminal.  I know this person was concerned about safety because she says she washed the squash carefully.  And don’t tell me a boy wouldn’t do that.  In Somalia no one would do such a thing because they would immediately eat the zucchini to fend off starvation.

Dr. Bob and his partner had recently gone on a long trip around the world.  They were not impoverished or uneducated but they did not shut the inconvenient and scary others out of their lives, nor did they go to the other extreme and devote themselves to carrying bedpans for the afflicted.  The intelligent thing to do was write funny but true answers on The Forum and intelligence was the name of the game.  When such a mind is lost, we should all grieve.

DE-MYSTIFYING AIDS

When I was little, my father brought home a book about atoms, very simplified, and I struggled my way through it, believing that I could understand it.  (My family believed that anyone who could read had access to the key to the universe.)  Since then I’ve always had a clear mental picture of a cluster of balls with balls zooming around it -- a sort of solar system of entities.  Quite inaccurate but useful.

In grade school we all saw a Disney movie about how vaccination works:  little spiders get into your body and victimize the little round red blood cells, so white blood cells attack them, wearing Civil Defense helmets.  The vaccine was little green turtles that the white blood cells could use for target practice.

So I approach the task of understanding one HIV particle at about that level of sophistication.  This is probably a force for good, since I expect much of my readership is in about the same state, but it also means that I might get things wrong by oversimplification and misapprehension.  (Big words for dumb mistakes.)

First, one must start way way back at the beginning of life.  Living things (organisms) are composed of self-replicating protein processes.  A protein is a complex organic compound that includes carbon, hydrogen, oxygen, nitrogen and sulfur.  Proteins are organized (note!) into a-amino acids joined by peptide linkages.  Twenty different amino acids are common building blocks which the protein organizes (there it is again!) into enzymes, structural elements, hormones, immunoglobulins, and so on.  That’s what a body is made of, what runs it, and what reproduces the original blueprint in a new body plus whatever everyday new cells need to be made. 

The reproduction code is carried in every cell’s nucleus.  (A few cells like red blood cells don’t have nuclei.)  The code is arranged in pairs on strands called chromosomes, along which are the genes  which are always one of four kinds, assigned letters the same as the notes of the musical scale.  Genes “shake hands” between the two chromosome strands.  (Because of assigning letters it is possible to play a genome as music, which is interesting but not helpful.)  The genes are shaped like a double helix (twisty) and around them is a epigenome.  Imagine two grand pianos onstage and backed up to each other (chromosomes) and around them a full orchestra (the epigenome which is also protein).  Everything that gets expressed in the body in terms of what it does and how it renews and protects itself all goes back to these mechanisms.

Bits of genomic instruction can jump between creatures, either plants or animals.  We call them viruses.  The viruses of other creatures can jump to us because of proximity, because of breathing them, because of ingesting them, because some vector like a flea carries them across.  Ten thousand years ago when animals were first domesticated a LOT of viruses jumped.  Think cowpox-to-smallpox.  A few years ago a virus called “West Nile Virus” got into the mosquitoes from birds.  Now ranchers must inoculate their horses every spring to protect them.  One in 150 infected people will get very sick from this “neuroinvasive” virus which afflicts horses and cats more than other species.

The zillions of genes on human chromosomes may include more code left over from past invasions than code that actually makes and maintains the body.  Recently some “fossil” genetic material from the HIV “family line” turned up in lemurs in Madagascar, possibly 65 million years old.  It’s dormant in their systems -- doesn’t do anything.  About one in a hundred humans, usually with northern European bloodlines, is naturally immune from HIV-AIDS.  This is thought to be the result of a very ancient plague.  But people who are immune to HIV are unusually susceptible to “West Nile Virus.”

How this immunity is achieved, we all want to know.  It helps to have a mental picture of a virion, which is one particle of the virus, outside a host cell and surviving in crystalline form, capable of infecting a cell.  A crystal is “a naturally produced angular solid of definite form.”  Crystal: not living.  Virus: border state.  Cell: living.

Two kinds of nucleus are in a virus:  DNA, or deoxyribonucleic acid, is the hereditary code in humans and almost all other organisms.  To to  http://dnaftb.org/  to see helpful stuff (cartoons!).   Like DNA, “RNA is made up of a long chain of components called nucleotides. Each nucleotide consists of a nucleobase (sometimes called a nitrogenous base), a ribose sugar, and a phosphate group. The sequence of nucleotides allows RNA to encode genetic information. For example, some viruses use RNA instead of DNA as their genetic material  (we call them “retroviruses”), and all organisms use messenger RNA (mRNA) to carry the genetic information that directs the synthesis of proteins.”   

In short, RNA is a template for DNA.   Diagrammed, the virion looks like a sphere in a sphere:  a lipid (fat) membrane with a lot of protein “binders” or ports on its outside, an inner “capsid” (capsule of protein) which has inside it the actual RNA.  It works by getting that RNA template into a cell.  How it does that is of great interest.  It appears that the people with natural immunity (achieved because of two missing genes, a matched pair from both sides of the double helix) have no protein of the kind that would allow attachment and (ahem) penetration.  Researchers have figured out how to design siRNA (short interfering RNA) which turns the code against itself.  It’s possible but expensive.

There are “kinds” of RNA virus.  One way it is different is that it is “lente” -- not shaped like a lens but slow as in music.  This means that it was “under the radar” for a long time, simmering along in the African jungles, killing people who were “nobodies” in terms of modern medical awareness, probably getting it by killing chimps and certain monkeys for “bush meat” without any way to make the connection between illness and source, feeling cursed.   Their exposure would have been increased by the ecological displacement of growing populations, needing more food.  Undiagnosed and invisible, the viral code must have moved from village marketplaces to people brought in by tourism or pushed out through migration to cities, and then to white populations who are alert to their health and insist on diagnosis and care.  Even there it was a mystery for years.  Through blood exchange -- far more common in many ways than people had thought about -- the virus has spread around the planet.  There is no cure.  So far.  

The structure of the RNA is in threes, I guess, though the list looks much longer to me.  It’s not spiral nor double, but jaggedly folded.  The gag gene “provides the basic physical infrastructure of the virus.”  The pol gene supplies the basic mechanism for reproduction.  Other named genes are env (envelope), tat, rev, vpr, vif, nef, pvu, and tev, which is rare.  These bits have been mapped and photographed, both as whole strands and as little segments, but knowing which atoms are where in the protein doesn’t quite show how they interact in process.  It’s the process we’re after.  We ARE process.

What I’ve tried to do is to de-mystify this infectious virus, to “take the juju out of it,”  the curse off it, so that it’s no longer a matter of superstition and “magic.”  Getting it under control is a matter of practical good planet-keeping.  Otherwise, our planetary overpopulation problem will resolve itself, perhaps leaving alive only one out of a hundred of us.  

SORTING OUT THE "PHILIAS"

What is an adult?   Somewhere I have a list of characteristics from a mental health person -- I think Menninger -- but let’s be simpler.  Let’s look from the eyes of the offspring, the human being that is NOT an adult.

To a newly fertilized egg, an adult is code for a budding body plus a matrix in which to embed and grow, fed by osmosis from the adult blood stream to the newly creating one.  That blood stream might contain a virus, a bit of retrocode, called HIV.

For the emerging newborn the adult remains an environment supporting system but the passage through the vagina may infect them with HIV.  The adult is a vector, a disease carrier.

An infant or toddler gradually separates from the adult, if they get enough nurturing and embracing.  If they don’t, they die -- whether or not they have HIV or any other disruptive bits of code.  For the lucky an adult is a eu-adult or for an unlucky baby a mal-adult.  One supports growth and happiness and the other does not -- often the difference is somehow related to when that human being was forming.  A host of diseases must be guarded against, including HIV.  In countries where blood transfusions were routinely given to children as a health measure, hordes were infected.

Things can go very wrong in many ways.  Pediatric studies are those that address the process of children becoming adults.  We have no term for adults who specifically love children in a helpful way.  Maybe parents, with luck.  An adult who loves children is called a pedophile but it doesn’t really mean they love children: it means they want sex with children.  No one says “eu-pedophile” or “mal-pedophile.”  In fact, pedophilia doesn’t distinguish among the natural age groups of children, except for a few other broad categories with Greek names.  Adults who make sexual contact with children of any age can give them HIV, whether the adult is male or female, homosexual or heterosexual.

A hebephile wants sex with children who are barely beginning adolescence, the “second birth” into adulthood.  They are usually 11-14.  To those children an adult is a controller and a persuader because this age of child is beginning to think and to choose or stand against.  In some countries fourteen is old enough to be a legal adult, old enough to leave the home.  For girls, old enough to marry.  For boys, old enough to whore.

An ephebophile wants sex with children who are fully adolescent but not yet adult.  They are usually 15-19.  Our whole culture is ephebophilic.  We want to be old enough to be sexual but not old enough to be adult.  Someone’s daughter remarked recently,  “Seventeen” magazine is for twelve year olds.  An article confided that “Vogue” -- which is supposed to be for adults -- is really for sixteen year olds.  Someone remarked that the pattern for Playboy centerfolds is a sixteen-year-old girl who is three months pregnant.   Many female models and movie stars are that age.  Many whores and soldiers are that age, vulnerable to HIV.  Legal children this age consider themselves adult.  They say,  “I can handle it.”

If there is a term for wanting sex with children younger than 11, I don’t know what it is.  Legal status in terms of “philia” sex depends on several things:  To be plain, was this between an adult and a child or was this between children?  Is one is quite a bit (3 or 4 years) older than the other; is one past adolescence and one not?  If there is no fertility, is it sex?  If there is no penetration, if there is consent, is it okay?   Does it matter if the children are of two different genders?  One of the most difficult legal problems is sexually active ephebophiles, when one person is still a technical child  (“jailbait”) and the other is a technical adult but both are old enough to want to marry.  Yet marriage can require the skills of a full adult in terms of economics and raising children.  Success can depend upon the support of the larger community.

It is possible for an adult or another child to eroticize a hebephilic child or even younger by wrestling or tickling or presenting images and stories or even over-fond petting and grooming.  Even probing for damage by a professional counselor can be eroticizing, as in the case of the day care school hysterias.  Not all eroticizing leads to sexual performance, but it can cause acting out of many kinds.  

Sex and death can mix, either because the adult finds death exciting (maybe because of the control).  There is no word for this except murder.  (Necrophilia is sexual desire for someone who is already dead.)  There is no way to distinguish between killing a child for the pleasure of it and killing a child to shut them up.  They are vulnerable to accidental death, such as “the choking game,” and to street drugs.  Maybe over-the counter-drugs like allergy pills to make them sleep.

Sometimes when I tackle a conceptual problem like this -- which is the foundation for addressing the actual problem -- I end up overrunning my ability to truly and deeply understand.  And yet much of what we don’t like happening has its beginnings in not recognizing early signs or not having ways to think about what we are seeing or just not seeing it because we don’t have the concept.  These are human thinking difficulties in many risky contexts because of the prevailing confusion and, sometimes, the danger.  But if no effort is made to figure it out, to really look at what happens, then we can’t create laws and strategies to address them.  More risky is the practice of many in society to censor behaviors AND any mention of them by attacking the origin, trying to discredit that person.

HIV-AIDS is only one problem in a syndemic.  If our young people are having sex that creates babies when they are too young to have the resources to raise them, that’s one kind of problem.  If there is an adult in the family who thinks it is fun to tickle a child until they wet their pants, that’s another kind of problem.   If there is a child who has watched something disturbing and eroticizing, perhaps by accident, that’s another kind of problem.  They are all problems to some degree but often part of the problem is realizing that there even is one.  Maybe a child who is quiet and withdrawn just needs to think or maybe something life-threatening is developing.  I was a suicidal hebephiliac, to put it pretentiously/portentiously, and others have confided the same.  When we were little, no one knew.  We found our own ways to compensate, maybe reading which is one way (safe!) to find a consoling adult.  (My father traveled, my mother’s mother was dying of cancer, I had two younger brothers, and in those days I was a conformist.  No one even knew I needed glasses.)  I was lucky -- there was no AIDS then.  We were terrified of polio, the epidemic of the Fifties.

Sometimes I think I should put up a little booth like Lucy in “Peanuts,” a “listening booth.”  No therapy.  No advice.  Not a confessional.  Just listening, ten cents.  I think anyone who did that for long would be compelled to action.  


RESPONSE FROM MY CO-WRITER,  TIM BARRUS, WHO DOES LISTEN:


These categories are just too Freudian for me. They don't add up to what I know about sexuality. These are just boxes. The tragedy is that we scare people with this nonsense and they feel badly if they either fit into a box or don't fit into a box. It's lose, lose. Which is what we typically do in a clinical context when it comes to sexuality which is a fluid thing. But we do not really see it that (we give it that lip service) way, but the boxes are what people typically believe defines them. Very sad. 


I find it depressing. I deal with older adolescent males who have the hardest time with it. The younger ones are too filled with themselves to know. But the older ones have all this guilt just drilled into them. It is so hard to work past that. I honestly think Freud did a lot of damage. 


RESPONDING TO THE RESPONSE MYSELF:


I agree with Tim.  The boxes should go.  They were invented in the 1900's to fit a particular sort of temperament and set of scientific notions which are no longer relevant because of the DEEP paradigm shift and social changes of the past decades. But denial only goes so far -- how SHOULD we respond to the lives of young people -- INCLUDING their sexual lives?  ARE THERE any categories or principles beyond not harming them?


The trouble with Freud is that he was always projecting is OWN psychoanalytic issues onto everyone else.  Being raised in repressive Jewish society in Vienna with a nanny would give anyone a complex -- but the rest of us were NOT raised like that.  In fact, some have raised themselves.