Please Remember Me

Rev. Peter Friedrichs

December 2, 2007

There is perhaps no more powerful way to communicate than through the telling of stories. Before recorded history, eons before radio and television and the internet, we told stories. Huddled around a fire, we would share with our children the stories that were told to us by our mothers and fathers, who had learned them from their parents and down the generations. Narratives shared through an oral tradition touch us in ways that mere statements of fact cannot, and some of the most important and lasting lessons we learn begin with "Once upon a time…" Yesterday, with little fanfare, the 20th annual "World AIDS Day" was observed. I will confess that I would not have paid much attention to the day, had it not been for the fact that my daughter is currently serving in the Peace Corps in western Africa, promoting HIV/AIDS awareness and safer sex practices.

The AIDS epidemic has lost much of its urgency in the so-called developed nations of the world. It has taken a back seat to more pressing concerns like the "war on terrorism," global warming, and the rising price of oil. We don't hear about movie stars or star athletes dying of the disease any more, and those living with it (like Magic Johnson) are no longer making headlines. We don't see acres and acres of quilts spread out on the National Mall in Washington, D.C. the way we did in the nineties. Pharmaceutical companies are earnestly developing and marketing anti-retroviral drugs to combat the symptoms of the disease and to slow its progress, and it's become more commonplace to hear about people living with the disease, rather than dying from it. It just doesn't seem to be on people's radar screens all that much any more, unless you're a member of a high-risk population, or you've just met the love of your life and are considering having sex with him or her for the first time.

And so, for the next few minutes, I invite you to hear the voices of people living with HIV/AIDS. To receive their stories as gifts that touch your hearts, that remind you of the devastation that this virus has caused and continues to cause, perhaps to stir you to action. And most of all, to remember that, by current estimates, there are about 33 million more stories out in the world waiting to be told. The stories of African men and women you will hear are true. They have been taken from the book 28: Stories of Aids in Africa by Stephanie Nolen (Walker & Co. New York 2007). "Frank" is a composite character of my own creation.

"Hi. My name is Frank. I'm 38 years old and I live in Lansdowne. I work for US Air at the Philadelphia airport as a baggage handler, been there almost 6 years. I tested positive for HIV back in 1994, so I've been living with the disease for 13 years now. When the doctors told me that I had AIDS, I wasn't all that surprised. I'm a recovering addict, sober for almost 20 years, can you believe it? I'm sure that some needle somewhere along the line got me infected. When I first got the news, I thought it was a death sentence. I had known guys back in the '80's who were diagnosed and dead within a year, so I didn't think my future looked too great. I kept it a secret for as long as I could, but my sister found out, and she told my mother, and then my whole family knew. I guess, given my history, they weren't completely shocked. But they rallied around me, and they've helped me cope. They've also made sure that I get to the doctor regularly for check-ups. About two years after I was diagnosed, my doctor told me my blood count didn't look too good, and he wanted me to start taking a "cocktail." Now, being an addict and all, I said "Cheers, doc! I'm all for that." But he didn't mean booze. He put me on a mix of pills that were supposed to slow down the disease. I counted it once, and I was taking 120 pills a week at one point. I couldn't really afford it, but my folks helped me out. I began to feel better almost right away, and now I'm on what they call an "anti-retroviral" treatment, and I feel great. It doesn't cure the disease but the doctor says I can live for decades if I stay on the meds, eat right, and don't do anything stupid. My health plan through US Air even picks up the tab for my ARV's. I thought AIDS would kill me in a year, but here I am."

Frank, and all the rest of us, are lucky to be living in America in the twenty-first century. HIV/AIDS is not the killer it once was. Don't get me wrong: the virus itself is no less deadly than it was in the mid-1980's, when it ravaged urban communities in New York, San Francisco and elsewhere. But unlike the decade from 1985 to 1995, when the rate of new AIDS diagnoses was growing exponentially each year, since the turn of the century we've see a significant reduction in the rate of newly-diagnosed people. More importantly, the morbidity rate for those with the disease has been reduced by nearly 70%, from a high of about 50,000 Americans who died in 1996 to fewer than 20,000 per year today. This is the good news about HIV/AIDS, but it's not the only news. While overall infection rates have stabilized, scientists have become alarmed at the disparity in the rates of new cases between whites and non-whites. Today, minority Americans represent more than 70% of new AIDS cases each year, and nearly half of those living with HIV/AIDS in the U.S. are African-American. The AIDS case rate for African Americans is nearly 10 times that of whites. Women are accounting for an increasing proportion of AIDS cases, especially women of color. So, perhaps I should rephrase my earlier sentence. If you are a white male, you're lucky to be living in America in the 21st century.

"My name is Pisca. I am forty-seven years old and I live in Zimbabwe. Now I am an AIDS counselor, but my story begins twenty years ago. My husband Bruce and I were living outside Harare, the capital, and our baby Agnes was sick. She was the youngest of our three children and she had diarrhea and a cough that wouldn't stop. I took Agnes to the clinic time and again, and each time they sent me home without any diagnosis. Finally, one of the doctors took her blood to test it. I brought Agnes back to the clinic in two weeks and no one would talk to me. Even the nurse, who knew me from my many visits, was cold and rude. She threw a piece of paper at me and said 'Those are your results. Your daughter has AIDS and she is going to die. Don't waste your time.' AIDS? Where does AIDS come from? I thought to myself. I looked down at my daughter in my lap and she was not a child anymore, she was something - she was now AIDS to me. I threw her on the ground and ran away screaming. The next thing I knew I woke up in the hospital, Bruce was standing over me. 'Bruce, we are dying,' I told him. 'Because of AIDS. I'm a moving grave as you see me.' But he told me we were not sick, that Agnes's test was a mistake. He took us home, and he was very mad. He told me he would kill me if I told anyone about our diagnosis. We kept our AIDS a secret from everyone. Time passed, two months, ten months, two years and we were still living. But in our home there was no happiness because of our secret. We did not test the other children because we didn't want to know.

Almost nine years after Agnes was diagnosed, she became very thin and frail. Then lesions appeared on her face. I took her to the hospital and we saw many others with the disease. I know she could hear people dying in the rooms next to her. She would cry and say 'I think I'm also going to die, because the pain is too much.' I took our baby out of the hospital so that she could die at home.

Bruce had gone into town that day, although I told him that the end was near. By the time he got home, Agnes had died. Bruce could not take it. I think he felt guilty, because he knew he had caused her death. At the cemetery when we buried Agnes, he went into convulsions and soon he was dying too. Because he made me swear never to tell that we had AIDS, his family accused me of witchcraft. They said I had cursed him, so that I could get all his money. They came and took him from our home, and later that night they came with a truck and took all our possessions, even the children's clothes. They would not let me see him, ever again, and I didn't learn that he had died until two weeks after.

It was after Bruce had died that I found the support group in Harare. I had heard about it on the radio and I just went. There were women, black and white, who all had the disease. They took me in and I could finally talk about it. That group saved my life. They even paid me to train to become a counselor. And they gave me strength to tell my family about my AIDS. But when I told them, they beat me. This scar on my forehead is where my sister hit me with a bottle. This one on the back of my head is where I was hit with a bench that my brother threw. And this scar across my chest was where my other brother cut me with something, I don't know what. AIDS brings a lot of problems and hatred.

The HIV/AIDS pandemic in Africa has reached staggering proportions. Let me throw a few statistics at you, although I'll admit that they're hard to absorb. Ninety-six percent of people currently infected with HIV live in the developing world, including an estimated 23 million people in sub-Saharan Africa. Of the two million men, women and children who will die of AIDS this year, more than three-fourths live in Africa. There will be somewhere in the neighborhood of 2.5 million new cases of HIV/AIDS diagnosed this year. More than two-thirds of those will be Africans. Of the approximately 2.5 million children worldwide who have the disease, a full 90% are African children. Half of those children will not live to see their second birthdays.^[1]

"At my age, I though I would be resting under the shade of a tree, knitting and being cared for by my children. I am near the end of my life, and I would like to relax. But all of these children need to be cared for. These children, their mothers and fathers died. I gave birth to seven children of my own. They were happy and healthy, and like most children these days, they moved to the city when they were old enough to be independent. In 1998 one of my daughters died in Lusaka. I went to the city and saw that her husband had little life left in him. According to our tradition, as the grandmother you are responsible. You cannot disregard your grandchildren. I brought her children back with me here. The next year, another daughter and son-in-law died, and their children were sent to me. Then, Lovegirl, my third daughter, lost her husband and she moved back with her children, plus two orphans from another daughter. She died within a few months. Now, I have fourteen children in my home. My last daughter, Jacqueline, is 32 and she lives with us now, but she does not have much time left.

It's trying, it's difficult. The only way I manage is that what little I get, I give them. Even if it's not very nice food, as long as it helps them to live. The biggest problem is that I have to till the land, and I have no animals to help me plant a big maize field. It pains me to hoe and to plow, but I have no money to hire laborers. The older children help as much as they can. And now we have a new baby to feed. I was surprised that my granddaughter was having sex, but she did it to get food and money to help us. I worry that she and my other granddaughters will become infected by the older men in the drinking places, but what can I do? I try by all means to make the children happy, because if I look sad they will worry and wonder what is happening, so I must tell them jokes. In the evenings when we sit around the cooking fire, I tell them stories, I sing them songs. I wish them happiness. I will take care of them until I am dead. My name is Regine Mamba."

AIDS has virtually wiped out an entire generation of Africans. In some African countries, the infection rate is over 30% of the population. One person in three has the virus. The rapid diffusion of HIV/AIDS throughout sub-Saharan Africa and its persistence can be attributed largely to one single factor: poverty. Poverty has impaired efforts to educate people about the disease and it prevents people from taking measures that might save their lives. It also compels people, particularly young women, to engage in practices that are killing them. Many African cultures are strictly paternalistic, and women are entirely dependent upon men for their survival. Because they have no education and no means of support, women are forced to stay with husbands who have multiple sexual partners. When their husbands die, they are forced to look to a man, a patrón, to support them in exchange for sex, or they engage in so-called "transactional sex" with multiple men, exchanging sex for food, clothing or even, ironically, anti-retroviral medications to treat their disease. Or, they move far away to find work, taking the disease with them. Poverty also keeps people from getting tested. Many would rather remain ignorant of their status, because they are too poor to afford treatment, so why find out you're HIV positive? Because AIDS affects young people of reproductive age, it has robbed countries of the population that grows the food and works in the factories and teaches in the schools and runs the governments. It has created a vast shortage of manual and intellectual capital from which the continent will not soon recover.

"When I graduated from nursing school in 1980, a rumor went around the clinic where I was working that one of the other nurses had been diagnosed with AIDS. People were running away from her screaming 'She's HIV! She's HIV!' Then another nurse fell ill shortly after that, and then so many more. As the years went by, I counted more than two thousand nurses that I worked with or studied with - all of them killed by AIDS. Through the 1990's, nurses and doctors and clinic workers were just disappearing. Even professors. You would ask one day, 'Where's the janitor?' They all died. We are still losing nurses. The government is blaming emigration to rich countries, but in fact, they die.

Today I am strong because of the medicine, but I, too, almost lost my life to this disease. Soon after I married Johnny, I suspected that he was going around. In 1994 I developed a painful case of the shingles, and I knew at my age that I should not have shingles. I was breastfeeding my baby at the time, and I immediately stopped. I went to a private lab to get tested and they sent me away. They said 'There is no medicine, why does it matter? If we tell you yes, we'll just make you depressed.' So I went home and told Johnny that if we were going to have sex again, we would have to use a condom. He became very angry with me and refused. He told me he would just go to bar girls instead. I know Johnny gave me the disease, because I was a virgin when we were married. He couldn't blame me.

The disease hit me hard in 2002. I had pneumonia and I was coughing up blood. The public hospitals did not have anti-retrovirals then, but you could buy them on the black market. Between my work and Johnny's, I could afford to buy them. It was like a miracle. Within a few weeks I was strong again and able to go back to work. Johnny got tested in 2002 because he had tuberculosis many times. Now he is on ARV's and has become very strong and fat. He thinks he is healed, so he's started moving around again. I tell him 'You know, you're HIV positive and you're going to spray it' but he keeps on spending his salary on bar girls. So many educated people, and they keep getting sick. The people who ought to know better take the biggest risks of all."

There are glimmers of hope in the stories of those living with HIV/AIDS. Globally, the rate of new infections has stabilized and even begun to decline. Sadly, this is in part because those who are most at risk have either already become infected or they have died. But the rate of deaths from the disease appears to have peaked and stabilized as well. This is in part due to the infusion of cash into the medical system from foreign countries such as the United States and Great Britain, as well as private foundations such as The Bill and Melinda Gates Foundation and the Global Fund to Fight AIDS, Tuberculosis and Malaria. You may have seen that President Bush has asked Congress to double the amount it will send to Africa for AIDS treatment, raising it to $30 billion over the next five years. The availability of anti-retroviral drugs has improved, and more than one million Africans are now receiving treatment for the disease. The Clinton HIV/AIDS Initiative has been instrumental in negotiating with drug-makers to come up with a cheap, easy-to-administer ARV regime that will enable treatment of children for as little as 16 cents per day.

When I hear of the desperate plight of so many, part of me wants to retreat into my safe cocoon, and the words of Wendell Berry's poem "The Peace of Wild Things" call to me:

And yet, as people of faith, we are called to bear witness to injustice wherever we find it. Bearing witness requires that we see the faces and hear the voices of those who are marginalized, those who are displaced, those who are suffering, those who are dying from preventable diseases. Bearing witness to another's pain draws us out of our comfortable places, where we rest in the peace of things both wild and familiar, and challenges our spirits to respond from a heart of compassion.

Let us then be mindful today, of the plague that is killing our brothers and sisters, both at home and abroad. Let us not, in the safety and tranquility of our healthy and secure lives, ever forget the Pisca's and the Regine's and the Alice's and the Frank's, and the millions of other tragic stories that are being lived out every day before our very eyes.

Blessed Be and Amen.

Closing Words:

We change our world by bearing witness to what is in front of us daily. Because everything is interconnected, nothing is trivial or inconsequential. Our small moments of authenticity have large impacts that we are often unaware of. The alternative is indifference. What is the virtue of our shared indifference? Why do we want to pretend that what is real is unreal? Our mindlessness is the most fundamental harm we do to ourselves.

-- Dr. Tom Heuerman

^[1] GlobalHealth.org

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