Eshtine

when words sink in

Once when I was in grade school, playing out in the park, I discovered a dead sparrow at the base of the basswood tree. "Don't touch it," a girl in my class warned. "You'll get AIDS."
That was the beginning, when the word was just starting to work its way through the country. A few years later came the first deaths of anyone we might have heard of. And then Marc Connors of The Nylons, my first musical obsession, died. I could not establish right away that AIDS had been involved. The first reports of his death said it was from natural causes. He was 41 years old.
I was 15. Shortly thereafter I was a sort-of activist, watching "And the Band Played On" to learn the disease's history, participating in AIDS walks. Much of my motivation came from the desire to write about Marc--if I was to do his biography, I wanted to understand a little of what he went through. His death had actually poisoned my compassion. I wore a silver bracelet to signify I was on vigil for a cure, but a part of me hoped a cure would not come, at least not soon. It was unbearable to posit a world where, if Marc had just hung on a few years longer, he could have gotten a vaccine and lived the rest of his life in peace.
I was looking to alleviate my own suffering, then, my ignorance of and my isolation from AIDS, when I volunteered for Food Outreach. This is an organization that prepares and delivers meals for those with HIV/AIDS. The theory is simple--when you're sick, you don't want to eat, or you don't have the energy to make something for yourself, and this illness may have isolated you from casserole-toting friends. Proper eating, meanwhile, and the knowledge someone cares enough to cook your meals for you, is therapeutic. It helps keep people alive.
So for the sake of the dead I hung out with the living. Several of my fellow volunteers were HIV positive, and over the course of my time there I met many others living with HIV/AIDS. Some were picking up their own meals; I delivered meals to several others. I absorbed from the experience a kind of battlefield toughness. Dark things were involved, and these darknesses were sometimes no fault of the people affected and sometimes a little more within their control. One of my "clients," for example, was the poorest woman I have ever met. She lived in an apartment that looked like it was made of cardboard. Cockroaches wandered the kitchen. One week when I came to Food Outreach my boss told me I didn't have to deliver to her. Faulty wiring had burned her home down; she was at a shelter now. Next time the news was she'd been assaulted at the shelter--she had a black eye, was all cuts and bruises, had even gotten something broken, an arm or wrist--I don't remember.
At this report I stood gaping at my boss, unable to take it in. How could someone have nothing--no health, no money, no home--and then get beat up on top of it? What kind of world was this?
Then there were other tragedies. Food Outreach would distribute cases of Ensure, the nutritional supplement. But the organization had to start limiting this because Ensure had street value--people were selling it for drugs. For drugs! You could get bitter reaching out a hand to help someone only to have it slapped. I saw bitterness, cynicism, despair, but I also saw people show up week after week to pack food and take it where it was needed. It took something that didn't look like heroic virtue because the evil being fought was so petty, the bureaucratic kind of evil of daily life. But what it took was summed up by a sign outside Doorways, a residence for people who are HIV-positive. The sign says "Courage in the face of fear." Courage was required of both the helpers and the helped.
I quit volunteering at Food Outreach after I finished the book. By then, too, AIDS had changed. There were drugs that were making the viral load go down to almost nothing, allowing many to return to the picture of health after being up close and personal with death. There is still no cure, and many can't afford the drugs that make the difference, but the plague years and their all-pervasive mood of hopelessness have passed.
Just as all started to stabilize here, word filtered through that Africa was exploding. I started seeing reports in the newspaper and in magazines about villages with a funeral every week, about cities where a third of the young adults carried the virus. Again, it all seems so hopeless. Prevention efforts are stymied in several directions. I read one article about a clinic worker asking a young man if he had engaged in any homosexual activity. Of course not, the man said. He had done some playing around with his friends, though. Other reports said in conservative Muslim countries you couldn't even use the word "sex" when you tried to teach sex education. And if a woman asked a man to use a condom, she risked getting thrown out of the house.
Not only prevention, but treatment options are limited. The drugs that have turned American lives around are monstrously expensive. Why even bother getting tested if you know you can't afford treatment?
It looked as if everything possible was being done, but that there was nothing to be done. Millions of people would die, just as they had from bubonic plague in the Middle Ages, with just as little opportunity by anyone to prevent if from happening.
But that wasn't true.
A couple of weeks ago, thanks to my post-Nylons musical obsession, I was watching the webcast of a World AIDS Day event in Lincoln, Nebraska. Ironically it was presented on the very stage where I once saw The Nylons perform, the Lied Center for the Performing Arts on the University of Nebraska campus. I was watching becasue Bono was going to be there. For the last several years he has been noisy about Africa's ills and the responsibility of the rest of the world to help where it can. The drugs are out there, he keeps insisting. They make people better. "People are dying for the stupidest of reasons--money."
All this I'd heard before. Bono's been beating this particular drum in every possible venue, including U2 concerts. (Once he reported on stage that the head of a US AIDS organization said it was useless to send drugs to Africa; Africans don't own watches, they wouldn't take the drugs right. Bono shook his head in disbelief at the crowd. "Should we all just send him wristwatches?") But this time, he didn't speak for long. He turned over the mike to a woman named Agnes Nyamayarwo. She was from Uganda, travelling to the US for the first time.
In perfectly clear, musically accented English, she told the story of her husband's AIDS diagnosis, how they sold all they could for the drugs to keep him alive, how when he died she had ten children to raise. How her eldest cracked from the fear and his friends' abuse and ran away. "I searched for him a long time. I do not know if he is alive or dead." How she learned she had HIV. How her youngest got sick and died when he was six and a half years old. Agnes paused then, her voice breaking for the first time through the litany of tragedy. "I live with the guilt that I did not give my child all the best, as I should have. I gave him death."
I at least was watching on my computer. I could have walked away. I wondered about everyone in that auditorium in Lincoln, Nebraska, those who'd snatched up tickets for this free lecture in a record-setting 17 minutes. If I had been there, I would have wanted to crawl under the seat.
The drug that could have saved Agnes' child is called Nevirapine. A one-dollar dose of Nevirapine given to an HIV-positive mother and her child can stop her from infecting her baby either during delivery or through breastfeeding. But millions of Africans can't afford it. Jesse Helms, of all people, he who once was so against foreign aid he held up payment of the US's United Nations dues, proposed $500 million to help mothers not give their children AIDS--but President Bush vetoed the first year's spending on it.
I mention this--I mention all of this--because some new words on AIDS are sinking in. The message I've been hearing is that there may finally be a way to stop at least some of this unimaginable tide of death. And part of what I can do that might actually help is to talk about what I know to everyone I know, phone the President, convince others to phone the President--because by staying silent I am agreeing to let people die.
----
Call (202) 456-1111 between 9am and 5pm on Wednesday and Thursday, December 18th and 19th, to ask President Bush to make a historic AIDS initiative part of his January trip to Africa.

When you call, please follow the prompts until you get an operator who will take your message. If you are calling from a touch tone phone press 1 and then, when asked, press 1 again to leave a message. The operator will ask for your home state and message.

We suggest the following message:

I am calling to urge the President to offer a historic AIDS initiative on his trip to Africa. The President has the chance to offer hope to the 2.5 million people who die each year of AIDS in Africa. If the President will commit between $2.5 billion and $3 billion each year, we can save millions of lives.

Or email the President at president@whitehouse.gov.

For more information, see DATA's website.

Posted by eshtine at December 18, 2002 07:30 AM