Letters From the World of AIDS: Letter 4

Dear loved ones,

I am now writing you from Kampala, Uganda where I have been doing location scouting and research for the last few days. It's 9:00 a.m. on a Wednesday morning in Kampala, and tonight I board a British Airways jet in Nairobi for the long flight home. It seems like an eternity since I waved good-bye to you, Heidi, through the rear window of my cab as it pulled away from the Algonquin Hotel in New York City on that cold, drizzly morning in early February. I remember having so many questions: What would I find? How would I respond? Would the first shoot be successful? Would it in any way reflect the dreams I had nurtured during the long development period about what A Closer Walk could and should accomplish?

Whether I ultimately prove to be up to the task of realizing the full potential of this project is something I prefer not to think about too much -- better just to do the work than talk about it. Walk the walk. But this first trip to Africa has answered one question emphatically. The raw material -- the people, the stories, the deep and tragic reality of the epidemic itself -- is there, is present and persistent in the texture of life itself: rich veins of human experience begging to be mined. In this sense, this first leg of A Closer Walk's journey into the world as it really is has been vivid and inspiring beyond anything I could have hoped for or dreamed about.

I believe my last letter was at the end of our visit to KwaZulu Natal, and our journey continued in and around Johannesburg for a week after that with a series of shoots that underscored the depth and range of the epidemic's influence, and the frustrations that a growing number of concerned South Africans are having with a government that is -- curiously, sadly -- proving to be inept and recalcitrant in the face of a crisis that cries out for bold leadership at the national level, and is increasingly affecting every aspect of the country's life. If the first part of our trip to South Africa focused -- as I'm glad it did -- on the voiceless poor, those we met in the latter half were neither indigent, nor silent:

• Edwin Cameron, a Justice on South Africa's Supreme Court who is HIV positive, and who disclosed his status publicly -- banner headlines everywhere! -- two years ago. I have, in fifteen years of being a documentary filmmaker, interviewed a fair number of inspiring and fascinating people, but never have I put down on film an interview like Edwin's. Never have I seen the humanity and integrity of an individual come through as clearly and unmistakably as it did with him. Never has someone been so articulate, honest and clear. Talk about playing in Peoria -- not to mention Pretoria. Edwin will have the world hooked in ten seconds.

Jamie McIntyre with Robert Bilheimer (Director), Baragwanath Hospital

• Jamie McIntyre, a jovial, white-haired and white-bearded doctor and teacher, easily given to laughter, who runs the HIV prenatal units and research programs at Baragwanath Hospital in Soweto -- the largest hospital in the world, serving as it does the four million residents of what is arguably the largest ghetto in the world. More than a hundred women a day pass through their testing and counseling programs, and Jamie just shook his head and laughed when I asked him if Mbeki's pronouncements about the toxicity of AZT in pregnant women weren't "goofy." "Exactly the right word," he said. There was no doubt in his mind that Mbeki's ill-considered statements have created "needless obstacles" in preventing HIV transmission from mother to child, and in the end may cost innocent children's lives as well.

  Mark Heywood

• Mark Heywood, also a wonderfully articulate and passionate human being, small, about my size, looks a bit like Paul Farmer*, (in fact reminds me of Paul in some ways), is a lawyer who runs a legal resources and counseling program for PWA's in South Africa. I first ran across Mark in an article he wrote for Jonathan's** Health and Human Rights journal, so he was the first person I got to talk to directly about Jon's ideas. Perfect. As I sat there listening to him speak about health, dignity, and rights, and about how he is applying these ideas in his own work, I suddenly got tears in my eyes because at that moment I felt I was accomplishing one important part of what I had set out to do, which was to keep Jonathan's voice and vision alive, in as pure a form as possible. Mark was pure.

• Lucky Mazibuko, 28 year-old columnist for the Sowetan -- South Africa's largest circulation newspaper -- who publicly, and with great courage, disclosed his HIV status about three years ago. Lucky is quiet, handsome, very smart, a bit shy until you get to know him, and deeply committed to working with young people throughout South Africa. He has two kids, still lives in Soweto, and is emerging as one of the country's more prominent activists. He's agreed to let us do a profile of him.

  Musa at recording studio

• Musa Njoko, a beautiful 28 year-old HIV-positive woman who was one of twelve people selected by UNAIDS to go through a training program and then be placed in the human resources departments of companies throughout South Africa as part of an AIDS-in-the-workforce education initiative. We interviewed Musa, who works at Eskom, South Africa's giant electrical power supply company -- when we were in the Durban area two weeks ago. She had just recovered from a scary bout of meningitis that had all her friends very concerned -- but by the time we met her she seemed quite well. Musa sings beautifully -- she's a regular churchgoer, sings in the choir, and does solo gospel sets every Sunday -- so when she came to Johannesburg for an Eskom event the week we were there, I followed up our interview with her with a recording session, at which she sang her favorite hymn: "Jesus Loves Me." Wow. Caiphus Semenya, who produced the session, and as you know has an Oscar for his work with Quincy Jones on the movie The Color Purple, and has therefore seen more than his share of musical talent, professional or otherwise, couldn't stop talking about her -- nor could the two session musicians, a piano player and a guitarist he brought in to back her up. It was very special. We, of course, filmed the session as well. I pray every day that Musa will still be with us to hear herself sing in A Closer Walk.

• One of the nice things about this four week South Africa shoot was that I was ready for it to be over when it was over. You reach a point where you simply can't absorb any more, and I reached that point pretty much last Friday when we wrapped. Richard and Craig left that same night, and as I watched them pull away from the hotel in their white mini-bus loaded with gear I felt a pang of envy -- they were going home and I wasn't, and I had been here a week before they arrived as well -- but then I quickly felt a bit of relief. No crew, no shooting, a chance to reflect on and enjoy the satisfaction of a job well done by all, a quick trip to Uganda to keep things moving and on schedule, another five or six days that will bring their own rewards. And that's the way it has turned out.

Uganda

What I have found here in Uganda is in stark contrast to the South African scene. Visionary government leadership in the early 90's has created a climate here of complete openness about AIDS, with the result that they now have the infection rates down in the low teens -- after a killing feast that wiped out hundreds of thousands if not millions of people three years ago and has left the country with a huge population of orphans that its infrastructures are ill-equipped to handle. We are going to focus on the orphans issue when we come back in April, and interview the State President, Yuweri Musevene, as well.

The people I have met here have all been warm, welcoming, and helpful: Jaco Homsy, an MSF doctor who's doing fabulous work with traditional healers; his wife Rachel, an MPH who's involved in a variety of programs here and is going to help set up our shoot ; Becky Bunnell, an MPH (Jonathan was her thesis advisor at Harvard) who is attached to the AIDS Information Centre here in Kampala via the CDC; Major Rubaramira, a career officer in the Ugandan Army who has become an international AIDS spokesperson and activist, (Major told me he knew Jonathan for eight years. . . . I can't tell you how many people are eager to tell me how Jonathan affected them -- I see his influence everywhere); and, of course, Beatrice Were, a thirty-something HIV positive woman who has become one of the most prominent African women working on AIDS issues in her own country and abroad. (I had a great dinner last night with Beatrice and Richard, her fiancé, who is also HIV positive.

But, in summarizing this leg of my journey, and in some ways the trip as a whole, let me tell you briefly about Solomon Kapere, who I met quite by accident yesterday while visiting The AIDS Service Organization's (TASO's) HIV counseling and care clinic in Mulago, some ten kilometers outside Kampala. I had a brief tour of the clinic, where they counsel and treat some 200 patients a day, twice a week, and where we will shoot, because the faces of the people in the courtyard waiting area tell more silent stories than even a million words ever could. The tour ended, I needed a ride back into Kampala and as it turned out Solomon, who is a client of the clinic but also works for TASO as a staff person, was heading into town on his motorcycle to pick up the mail at the main post office, near the Sheraton, where I am staying. So I climbed on the back of the bike and off we went. As we approached town it started getting really dark and just as we arrived at the hotel the skies opened up in a big time African way and it started to pour, hard. So I told Solomon to follow me into the hotel to wait it out, and since it was around noon, I invited him to lunch.

Solomon is about 6'1", with beautiful white teeth, a gentle smile, sloping forehead, chocolate-colored skin, handsome and athletic - - he loves sports, especially soccer. He's twenty-seven and HIV positive. His wife died of AIDS two years ago. He has a four-year-old son who is healthy so far. He told me he hasn't had the "guts" to test him yet. In any case, even if he did, there's little they could do for the boy that isn't being done already. Solomon belongs to the 24-member theatre and music group that TASO sends around the country as a means of educating local communities about AIDS. Apparently this company -- which has performed internationally as well -- is pretty special, and very effective. We're going to film them too. As we talked about the troop and his work with it, I could see that Solomon has a wonderful creative side, and that here is a writer/director/actor in the making. When I asked him if he thinks about his illness much, he said that he thinks about it sometimes, but that, "life must go on, you know?" He told me matter-of-factly that he hopes and wants, of course, to live a long time, but does not expect to. If and when he develops full blown AIDS, there will be no drugs to treat him. All the original members of the TASO theatre troop -- formed in 1990 -- of which he is presently a member, are now dead. "AIDS has come to kill," he told me with that gentle smile. He also said that the lunch I bought him -- a pineapple and chicken salad -- was the best meal he'd had in a year -- a statement not intended to elicit sympathy; it was his way of saying thank you.

Our conversation moved on to other things, and by the time lunch was over the sun was back out and we said, goodbye for now, see you in April. He thanked me again. Later that afternoon, I was chatting with Becky Bunnell at the AIDS Information Centre, and I suddenly understood something that had been nudging around the edges of my consciousness ever since my lunch with Solomon. I've alluded to this before, but somehow, perhaps because the first leg of my journey is now at an end, it became utterly clear and real. I have now met and conversed with some twenty or thirty people with AIDS here in Africa, and to a man, to a woman, to a child, they are marked by an inner and outer aura of dignity -- that's really the only word for it -- that is deeply and richly human, and categorically different from anything I have ever seen or encountered in my life. This aura of dignity is not loud; it doesn't call attention to itself -- that's the point of my story about Solomon -- and it's not even something that you notice right away. It's far deeper and more subtle than that, and all the more compelling. I think it may be fragile, too: nurtured by love and community; made possible by the willingness to be open and therefore vulnerable; easily stripped by prejudice, violence, or neglect. Whether this heightened expression of human dignity represents the revelation that comes through suffering, I don't know. In fact I don't understand it at all, at least not yet, nor do I think it's necessarily important to know what it "means."

The key is that it is there. It is there for me to see, and experience, and for others, hopefully, to see and experience through A Closer Walk. What we make of it is perhaps best left to each of us, individually. Personally, it has awakened in me a sense of privilege -- not only to know these individuals and develop friendships with them -- but also to be a member of the human family, even the human race. At different moments throughout the last five weeks, the people with HIV/AIDS that I have met here in Africa have revealed to me what is possible: grace in the face of adversity; courage in the face of despair; laughter amid tears; selflessness and compassion where self-pity and fear might justifiably carry the day. They have shown me what it means to be "more human." I do not know if I personally will emerge as a "better human being" for all this -- I'm not sure we're talking about osmosis here. But I do know that I feel, as I said, privileged to have seen what human beings are capable of when faced with unspeakable suffering, and for that privilege I will always be grateful.

So the first leg of the journey is indeed complete. I am looking forward to talking about all this and more with Paul Farmer in Haiti in a few weeks hence. Then back to Uganda. The journey continues.

Love to each and all, and thanks for everything these past weeks.

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