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The Body: The Complete HIV/AIDS Resource
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Robert Bilheimer
Letters From the World of AIDS: Letter 3
Johannesburg, South Africa

February 26, 2000

Dear loved ones,

We're back in Johannesburg after nine days of filming in KwaZulu Natal. The time we have spent living in one of the epicenters of the global AIDS epidemic is an experience that will remain with me for the rest of my life -- harrowing and surreal -- but also replete with the most extraordinary and inspiring examples of human dignity and courage I have ever witnessed. And I'm happy to report that we have recorded much of this experience on thirty rolls of Vision super 16-mm film, now safely in a lab here in Jo'burg, to be processed on Monday. What we have, I believe, are stories and images of immense symbolic power. Richard and I and the crew are really clicking, and what we're getting, consistently, are stories told from the inside out that we're then combining with a visual language that is, for lack of a better term, painterly. In keeping with one of the film's operative metaphors -- that of a journey -- I want to explore the potential of the documentary genre with A Closer Walk as fully as I can. It's so rich and full of possibilities, like life itself. Heaven knows, we have the subject to match our ambition.

One example from last Wednesday of the kind of thing I'm talking about: We were visiting a clinic in Ghamalake (gamma-la-kay), a rural town about half an hour south of Port Shepstone. This clinic handles 400 hundred patients a day, and well over 75,000 a year. Increasingly, they are AIDS patients. In any case, I was doing an interview with Sister Philda Namile who runs the place. Sister Philda is a strong, intelligent, self-confident, somewhat voluble woman of impeccable bearing with an immaculate uniform, silver wire-rimmed glasses, beautiful shiny black hair pulled straight back, and a built-in air of authority that I guess you acquire automatically when you run a clinic that sees 75,000 patients a year and gets a doctor visit but once a week. Sister Philda and I were talking about her clinic and other matters, and the interview was going quite well. We started talking about HIV, and how, after five years, the first wave of widespread infections that spread through the region like wildfire in the mid-90s, are now developing into full-blown AIDS and how terrifying the future is. And then, suddenly, she stopped and turned away from me, so we were now shooting her in profile, looking out the window. The sun happened to be just right, and light bathed her dark skin, making it almost luminous. For thirty seconds or so she said nothing, and neither did I. Then she said, her rich, resonant voice almost a whisper, "It's painful . . ." Her voice rising, she then completed her sentence: ". . . when you see what this is doing to our families, to our mothers and brothers and sisters and fathers and sons." She stopped and then continued, her voice again in a whisper, "It's painful . . ." Her voice rose again, ". . . when you see what this is doing to our community, to the future we have dreamed about, to our sense of hope. . . ." Five or so more times, she did the same thing: began a sentence in a whisper with "It's painful," and then finished out the sentence with a description of what the pain was, and how it manifested itself. It was one of the most spontaneous and moving descriptions of human suffering I have ever heard, and it came from a place deep, deep inside Sister Philda that I think surprised even her. I don't know what triggered it, but there it was. I'm calling these three minutes or so "The Opera," because it had that kind of quality to it as well. I fully intend to put it in the film precisely as it is. (No editing required.)

I want to bring a story around that began in my first letter, and then close with just a little bit about my friend Fezile. I guess I could say that the rest of what I want to share with you is about courage.

My first letter, as you know, was about 24-year-old Welcome Dlezi, who had died before the hospice workers could introduce us to him, and whose funeral we were invited to by his brother, David. That letter was also about the shrouded figure of Welcome's widow in mourning, 22 year-old Octavia, and their 10 month-old son, Nkosinathi.

Welcome's Funeral
We did attend Welcome's funeral last Saturday. It lasted about four hours, and some two hundred people from the area were there. Not all knew that Welcome had died of AIDS, of course. The ins-and-outs of who knows what about HIV in these rural areas are intricate: a complex web of ignorance, denial, privacy issues, fear, and at the same time an emerging sense of, "What is going on here?" as more and more young people, and indeed entire families, are simply dying. It's not poverty, death, or business as usual in these parts anymore.

Funeral Procession
The funeral itself was marked by beautiful singing; a procession of women in all their colorful finery behind Welcome's casket (another of those painterly images, this one of grief, that we were fortunate enough to capture); the digging of a very deep grave by the men; a simultaneous religious service attended principally by the women while still other women prepared the funeral feast; the burial; and then Octavia escorted to a nearby river by her female relatives to be washed and then returned in a ceremonial procession to her hut in the family compound. Through all this, our crew was welcomed and made to feel at home in the most natural way by everyone. With the exception of Octavia's ritual bathing, we recorded all the events of the funeral, including the opening of the casket during the religious service, when Richard and I were literally standing over Welcome's body. During this time I was next to Welcome's brother David as the mourners passed by the casket and at one point I reached out and took David's hand. He looked at me and tightened his grip, and I did the same. As I write I still feel his hand in mine.


Octavia Gets Tested

The real courage in this story, however, came four days later, this past Thursday, at the Ntabeni Clinic, a two-hour walk from the Dlezi family compound where the funeral took place. At this clinic we met Octavia, who had, of her own accord, come to be tested for HIV while still in mourning for her husband.

Octavia Dlezi
Let me describe Octavia to you. She is a shy 22 year-old with a beautiful smile. She is about 5'4" and quite frail. I would guess she weighs maybe 100 pounds. She has very black skin and her features are extremely fine -- a small nose, thin lips, large black eyes -- she seems more like a woman from Somalia or Ethiopia, than KwaZulu Natal. She is stunningly beautiful. When I met her at Ntebeni it was the first time I had really seen her or been close to her because up until this time we had been separated by the rituals of mourning and burial. She had gotten up at 5 a.m. that morning and walked, by herself, two full hours from her home to the clinic, and was there promptly at 8 a.m., the time we had agreed to meet her. I was embarrassed that we, with our cars and conveniences, were the ones who were fifteen minutes late.

Picture this frail woman wearing a black cotton hat, with pleats; a black cotton long-sleeved dress, pleated in the bust and full from the waist down; black shoes; and carrying a black briefcase with brass fittings and a shoulder strap. She reminded me of an Amish woman -- an African Amish woman -- because her clothing wasn't something she had just put on; it was a striking expression of a culture, tradition, and ritual that, once again, carried with it this enormous sense of dignity. It was a uniform of grief.

So what we have here at 8 a.m. on Thursday, February 24, 2000, at the Ntebeni Clinic in KwaZulu Natal is a 22 year-old girl dressed all in black whose husband -- they were married only last September -- has just died of an incurable disease; who has a ten-month-old son; who has walked, alone in her mourning, two hours over rough country roads to see if she has the same disease that killed her husband; and who has furthermore allowed a film crew from the United States to witness and record the drawing of her blood. "Why?" I asked her at one point. "I want to know my status," she said in reply. For whatever reason, she simply accepted me.

Octavia waiting to be tested
We filmed the counseling session that preceded her test, and the test itself. She winced when they put the needle in her arm, but she winced with a bit of a smile as well. This is a brave woman. The results will be back in ten days. Once Octavia was outside and in the car (the social workers drove her home), I spoke to the nurse who administered the test. Sister Margaret Zenda is a sweet, warm, round woman who has seen it all. She has compassion in her bones. There is light in her eyes. Neither one of us wanted to say to the other what we both knew: the odds are against Octavia. And against her son. There will be another funeral, probably two. Fighting back tears, we said goodbye in silent acknowledgement and with a silent hug, and went about our day.


Visiting Fezile

Bill visiting Fezile
For me the last thing I did that day was to say good-bye to my friend Fezile. You may remember from my second letter that after visiting Fezile for the first time I made a commitment to see him in the hospital each day just to be with him and I did follow through on that. What I did was to buy him a teddy bear, and a book with pictures of animals in it. Then I learned the Zulu names for the animals. So each day I would sit with Fezile for half an hour or so and say the names of the animals, and when I did, he would point to them and nod his head. Sometimes he didn't have the strength to point, but he always nodded his head, which I loved the most, and will always remember. Always nodding his head. It was very special. He was actually feeling better this week a bit, and sitting up. After the second day he recognized me and I would receive a big-time smile when I got to his bedside.

I knew that saying good-bye to Fezile would be difficult because we had formed a relationship and I knew, based on what Dr. Hardy had told me, that I would probably not see Felize again since I wouldn't be back in this area for six months. So on Thursday I simply did what I had done each day: read a bit, chatted, tickled him, held his hand, and then I just told him it was time to go, and I kissed him on the forehead, told him I loved him, and said, "I'll see you in August". I stood and then gave him the thumbs-up sign that everyone uses around here with a Zulu version of "Ciao." He gave me one of his smiles and his own thumbs-up. We just looked at each other with our thumbs in the air for five or ten seconds and I knew at the point that I would never forget this final image of that boy for as long as I live. Then I just walked out of the ward. Richard wanted to film some of this and did, and he told me later that he sat with Felize after I left and made him laugh by imitating a duck.

When I got outside I went by myself to a bench in the courtyard of the hospital and for the first time since I have been here in South Africa, I cried. Not heavy, sobbing crying or anything like that, but just a few hot tears that came and rolled down my cheeks, and that feeling in the throat that is so powerful. I sat there for fifteen minutes or so as the life of the hospital went on around me, and then joined my friends who by that time had loaded up the van for the drive back to Port Shepstone. We were all a bit silent and reflective on that drive, because our work in the KwaZulu Natal province of South Africa, for the time being, had come to an end.

I have been tired and reflective since arriving back here in Johannesburg, but want you both to know that I am fine and strong and though the making of this film is, of course, emotionally difficult, I have an absolute sense of what it is going to take to get it done right, and therefore it is very important to me that even though I share my thoughts and feelings in these letters, that you do not worry about me. I am gaining wisdom and strength from all this. Jonathan and I talked a lot about this part of the process. He knows, and I feel his presence with me all the time. (Editor's note: Robert is referring to his good friend, the late Jonathan Mann, the visionary public health leader and human rights activist who was the architect of the World Health Organization's program on global AIDS.)

This week will be different from what we have been doing, but equally interesting. We will be doing interviews with people who can put the suffering we have recorded into various perspectives; we are going to Baragawanath Hospital in Soweto -- an unbelievable place; and we are continuing our profile of Musa Njoko, who I will tell you about in another letter.

May I say that I feel truly blessed right now. Not only for being able to do this work, but for each and every one of you who shares it with me and in so doing makes it better.



Love,

Robert


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Fezile looking better, with production manager Diana Hyslop
Editor's Note: Octavia Dlezi did test positive for HIV and is caring for her one-year-old son. Fezile was visited at Murchison Hospital on September 5, 2000 by "A Closer Walk" co-producer Heidi Ostertag. His condition was much improved due to effective treatment for tuberculosis, and he has since been discharged. Dr. Hardy cautions, however, that in the absence of sustained treatment for his HIV, he will inevitably be back in the hospital sooner or later.










This article was provided by Robert Bilheimer. It is a part of the publication A Closer Walk: A Film by Robert Bilheimer.


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