guest columnist: sarah friedland

3:00 p.m.

10:15 am - the crew is feeling settled with our mornings work. We have followed our main character, Dani, as she makes the journey to the local clinic. We begin at her family home, a cluster of mud and thatch huts perched in the foothills of the Drakensburg, far above where I am used to families living. I ask her questions in English, Vusi, the interpreter, repeats in Zulu and converts the answers back into English for Esy and I. Esy follows Dani, walking backward with the camera, and I listen through the headphones. We make sure that everything falls perfectly within the parameters of proper filming practices. White balances are checked, focuses are checked, and sound levels are monitored. I watch the little bars of volume rise and fall with her voice, one step removed from reality by my headphones.

“Where are you going today? And what are you doing?” After translations, the answer comes back to me; “I am going to the clinic for my second ARV training session. I am very happy because I know I am going to live.” We are all thoroughly satisfied with this positive answer. Dani seems genuinely excited to begin treatment with antiretrovirals (ARVs), the miracle drugs that postpone death and sickness for HIV positive individuals. Through a government roll out program, these drugs only recently became available in South Africa. However, due to the meticulous way in which they must be taken, the Department of Health has developed the ARV training sessions, a series of classes mandatory for all people interested in initiating treatment.

Following Dani's small frame, we descend from her house to the road. We fake that she will be walking the 2 hour trip to the local clinic, instead we pick her up and drive her most of the way in our white, rental, SUV. However, you will not see that in the film. You will only see where we stopped along the road, the visually interesting spots where we asked her to walk. The effect will be staggering. The distance a person with full-blown AIDS is forced to travel to access health care will horrify the audience.

We leave Dani at the clinic make plans to pick her up around 1:00pm and take her back home. We do not want our main character to danger her health by walking home with a severely weakened immune system.

I am lulled to sleep by the slow ride through the rise and fall of the dirt road leading to our next destination. Jolted by the abrupt change in the road, I wake up and my eyes slowly open to observe the river we are driving through. As we pass, I wave to the workers dressed in royal blue jump suits. These men have been hired to do the manual labor necessary to erect the bridge that will joining the two sides of this river. The bridge, which has been promised for decades and which they have been trying to build for years, will connect people to the main road, to schools, and to the hospital and clinics. At one point the project had succeeded, however the new bridge fell victim to the rains of the summer months, when the trickle of water I observe now swells to become a formidable river. After their work was washed away, they started again. And now, every time we pass through here, they are sitting, waiting on the side of the road. Apparently they are waiting for supplies that have either not been ordered or not been paid for.


Our SUV passes through the river without a problem. About 5 km of a gentle incline leads us to the house of MamRossetta.

She is waiting for us in the entrance to her house. MamRosetta, like most of the Home Based Carers, is an extremely tough and warm person. Which is why she is so successful in caring for dying people. She wears a skirt that falls to her mid calf, sneakers, a button up blouse and a scarf. All of the different elements of this outfit combine magnificent, garish colors, which compete for my eye’s attention. Perhaps the most striking feature of the ensemble is the fuzzy, silver, hat that reminds me of thick Christmas tinsel. Esy and I have become especially fond of MamRosetta, as her presence reassures us that we are doing something worthwhile. She is oblivious to the power she has over us and, as a result, we feel committed to help her with transport for certain patients, even though they are not part of the film. She gives us both a big hug.

There is small talk as we all climb back into the car and ride down the street to Cindy’s house. I ask about other patients of hers’ that we have met during similar outings. She tells us that she does not know how they are because she has been very busy with the funeral arrangements of her neighbor who passed away a few days ago. She takes this opportunity to inform us that she will be unable to accompany us to the clinic this afternoon because she has to attend the funeral of a different neighbor. I am slightly disappointed because, not only do I enjoy her company, but I also know things will be inevitably more difficult without her expertise to rely on.

Funerals have become the main social function of this area. Every weekend there are multiple funerals and the dead must compete for the presence of shared loved ones.

We begin the steep decent into Cindy’s house along the path leading close to the house, winding through tall grass. It is by no means a road. We are forced to stop before the house, as it is impossible to make it the entire way with the car. We stop as close as the car allows. MamRosetta gets out to help the family get ready. We prepare ourselves for a long wait.

The last time I saw Cindy was about 2 weeks ago. She was in the group of people we were originally selecting from for the film. I remember meeting with her mother in their house. We were crowded into the small rondevel, a round, one-room home. The entire family was present, mostly faces I do not entirely remember, although the mother stands out clearly in my mind. She was laughing at Esy and I. She said we were sitting on the grass mats in the rondevel the way a young bride would and offered to find us husbands. The name young bride has seemed to follow us through the community. We liked her immediately. I remember watching her curiously while she moved around the low roofed rondavel on all fours, walking with her knuckles and knees, manipulating her way through the tight quarters. I also remember this evening not realizing that Cindy was present until I noticed the repetitive elevation of the blankets in the corner. Something was breathing under there. That was Cindy.

We decided it would be impossible to work with Cindy in the film, as her condition was too fragile. But we wanted to help her get her CD4 count , a blood test which calculates the number of white blood cells left in the body, and a requirement to receiving ARVs. We also said we would take her to the hospice in Tugela Ferry, four hours away, where they start patients in critical condition on ARVs immediately and there is a high rate of recovery.

We did not end up keeping either of these promises.

Tugela Ferry was reluctant to take her because they did not know her medical history or her family. It is a popular practice for family members to sue if a medical agreement does not work out the way it was understood. This has led medical professionals to be weary of taking risks with sick patients who might not live. And in the three weeks I have been here, sadly, some of this logic has rubbed off on me. The head doctor at Tugela Ferry wanted to meet with the patients and their families before agreeing to admit them. At the time, this seemed too difficult to organize and, instead, we decided to take our chances with the local medical system.

We took Cindy and some other patients to get their CD4 counts done with a private doctor. This doctor refused to take Cindy’s CD4, claiming that it had already been done recently in the public sector and that it would be duplication to repeat it. Afterwards we took Cindy and two other patients in a similar skeletal state to the hospital. We were hoping they would be admitted. After waiting for 3 hours, the patients were denied because they had not been referred from their local clinics. We carried these three patients back to the car. Exasperated and defeated, we tried to reach their local clinics before closing time. Cindy was the lucky one of these three patients that the clinic agreed to refer back to the hospital for admission. From the clinic, she was taken by ambulance back to the hospital where we had been only hours before. We took the other two patients back to their families and tried and explain our failure.

I roll down the window of the car to get a clear image of Cindy and her mother climbing up the hill to the car. Cindy is on her mother’s back, a 28-year-old woman getting a piggyback ride from her mother. Esy hops out to try and help in some way. Vusi and I remain in the car. MamRosetta and the mother manage flop Cindy’s limp body down on the seat and arrange her bones, trying and make her as comfortable as possible.

We leave MamRosetta behind and make our way to the clinic. In the car, conversation is strained to say the least. Vusi tries his best and, as always, we revert back to medical conversation. Why do you need to the clinic today? What will be done? These kinds of issues manage to pass the time as Vusi drives, very slowly, to the clinic. One gets the impression that he is trying to prevent Cindy’s bones from being too jostled. Cindy looks like there is nothing left holding her together.

11:30 a.m.- it comes out that they are going to get the CD4 count done so that Cindy can start ARV training sessions next week and then after the three weeks of classes is over, begin treatment. The usual confusion comes over me. Why did the private doctor not do this if in fact it needed to be done? Why did they not do it in the hospital while Cindy was admitted? I know now that I will never really get an answer to these questions and that no one is to blame. I have given up trying to understand the convolutions of the medical system. I look over at Cindy. She is being cradled by her mother, unable to hold her head up; it falls on her mother’s breast.

We arrive at the clinic. Cindy is carried inside. There is a line out the door. Everyone averts their eyes but I know they are secretly following us. One woman gets up and helps to find a wheel chair for Cindy. The nurses are nowhere to be found. Esy finds a chair for Cindy’s mother. I retreat to the back corner with Vusi. Vusi walks outside, I remain for a minute. The mother is sitting behind Cindy, Cindy’s head is still resting on her chest, she reaches up her hand to her mother, who takes it. Her chest is moving up and down violently.

A nurse walks by and says nothing; she walks by a few more times. I wish MamRosetta were here. Finally, the mother gets up the courage to ask the nurse for help. The nurse looks at the medical card and tells them to wait a minute and eventually escorts them into one of the rooms. Esy follows. I walk outside.

I am sitting in the sun. Esy comes out after about a half hour to give me an update. “The nurse said something about taking Cindy to a hospice.” “There is a hospice around here?” I say confused. “I guess so, she said she wanted her to be close… to the medical staff,” she replies. We agree to rouse the reluctant Vusi, who is also sitting in the sun, and get some answers. The three of us enter the clinic and find the room where Cindy and the mother are. Cindy is lying on a bed attached to an oxygen tank. There are about 5 nurses in the room all talking loudly and constantly stimulating the thick confusion blanketing the small room. It is explained to us that they have tried to take blood for the CD4 count but all of the veins are collapsed. Cindy’s mom looks at us deploringly. The head nurse addresses me, “where exactly are you taking Cindy after this?” “What do you mean?” I reply. “The mother said you were going to Tugela Ferry, to the hospice,” the nurse states. I am shocked, how could we have neglected to explain to the mother that we would not be able to take Cindy to Tugela Ferry. I am disgusted with myself. Vusi explains to everyone, very politically, that the hospice is full and they will not be able to take her there. I am so thankful for Vusi in moments like these. The nurse says in Zulu, “that is too bad because people really recover who go there.” I see the response of defeat in the mother’s face.

The room is quiet for a minute and then is filled with agitation about how to proceed. The mother wants to take Cindy home. The nurses want Cindy to be re-admitted to the hospital. The mother says the only reason she agreed that Cindy should go to the hospital in the first place was because she thought she was going to Tugela Ferry, not the local hospital. As Vusi repeats this to me in English, I notice Esy bowing her head to the floor in shame. Eventually the nurses convince the mother to take her child to the hospital and an ambulance is called. The mother’s unsatisfied glance keeps turning back to her child as if to ask, “what do you want? What is right?” About three minutes later the mother changes her mind. The child will not go to the hospital. The nurse reluctantly changes the note written in the medical chart to say that the mother refuses hospital admittance and the ambulance is cancelled.

Cindy stays in the bed. The nurses continue to work on the mother. Explaining that there is other medicine in the hospital that might help the situation. Maybe they will be able to draw some blood and take the CD4 count and then maybe, just maybe, she will be able to hold through the three of weeks ARV training sessions and receive “amapillies” (ARVs). The mother looks her child again, wet eyes, sweetly whispering to her. The mother changes her mind again; the child will go to the hospital. The nurses are in an uproar. “Can the signature in the medical chart be overturned?” “We will have to call the head nurse.” “The ambulance will not come now that it has been stopped.” “You must take her.” All eyes are on me now. My eyes dart excapingly around the room. Someone please help me.

“Vusi, what do we do?” “What if she dies in the car on the way to the hospital?” “Will I be responsible?” “We are supposed to pick up Dani?” I hate myself for thinking practically in times like this. Sometimes I think I would be a better producer than director, when my need for clean organization leaves me passionless. Vusi does not reply. He just looks down at his hands and shakes his head. He knows he is already in over his head. I look at Esy and follow her gaze to mother and child; the path of her eyes has not shifted once since we entered the room.

“OK, we will go pick up Dani at the other clinic, take her home and then come back and take Cindy to the hospital.” Everyone looks temporarily relieved. There is a chorus of “Syabonga”, thank-you, from everyone in the room, especially from the nurses. I wonder what the core of this relief is, is it that they truly want help for Cindy, or that, like me, they want Cindy to be out of their presence as soon as possible.

12:30 p.m.- on the way to pick up Dani; Esy, Vusi and I agree that nothing should be mentioned to her about Cindy. Dani was present when we went to the private doctor to get the CD4 counts done and met Cindy that day. She is luckier than Cindy and we do not want our main character to be discouraged by Cindy’s fate. The trip goes without a glitch. We collect Dani from the clinic. She is beaming. She has understood everything in the first adherence training and there was a guest speaker. A man who has been on ARVs for a year and is perfectly healthy and who’s CD4 count is now in the high 100’s. As we watch her small frame ascend to footpath to her home, we are temporarily relieved.

Back in the parking lot of the clinic, we watch the mother shift Cindy from her back into the car. She informs us that they wish to be taken home. She is a woman without recourses. Her eyes are full with sadness, accepting of the path unfolding. No one attempts to sway her resolve.

Vusi and Esy sit in the front. I am in the back seat, next to Cindy. Her head seems to have permanently settled on her mother’s bosom. There is still a slight movement coming from her chest. As we wind our way home down the dirt roads and back through the river, the mother speaks continuously. “It is not your fault…I am grateful for your help…Cindy has been sick for a while…She came back to us from Johannesburg already very sick…we tried everything…” During this deluge of memories, Cindy’s bottom jaw becomes unhinged. Her mother, without a pause, shifts her body up and gracefully slides a hand to Cindy’s chin, cupping her lips together for the rest of her journey. There is no more movement in Cindy.

2:00pm- Cindy’s mother requests that we try and reach the house all the way with the car. Vusi agrees without hesitation. At 3 km/hr we continue through the fields, creating a road as we go. The brother greets us at the back fence of the property and helps carry the body into the rondavel. Esy and I grab a few bags of beans and porridge and some rubber gloves from our supply in the back of the car. I look at the rubber gloves, asking myself, what are these going to be good for now.

We enter the rondavel. The mother has laid Cindy’s body on the grass mat. I give the goods to the brother. He looks about 13, a very shy boy. Ever polite, he accepts the offerings in the Zulu tradition with the left hand supporting the right hand just bellow the elbow. My transfixed gaze on this child is broken by a sudden awareness of the mother’s praise. She is leaning over the body, on her knees. Her hallow voice fills the space and her body sways. Again, my transfixed state is broken. This time, by Vusi’s gentle hand on my shoulder, beckoning me away from this scene. He is right, it is time to leave. I, in turn, tap Esy and, like dominos, we exit.

waking up,

after two more days of zombie life, walking through scanners, x-raying our bags and our bodies, getting fully frisked, undressed, unravelled unpacked and wrapped back up again. Two tonne-heavy wings, that through the magic of physics floated us back to familiar ground, and into the arms of our families. And after three and a half months of twenty-four hour togetherness, Sarah and I sadly parted ways at JFK. It was when she left that I realized how ferociously proud of her I am: pulling this off required immense passion and the endurance of so many 'no's' thrown at you, from funding applications to the process of getting ARVs itself.

The first few hours of American-watching were exciting, while waiting between flights outside in the seventy-six degree sunlight. New, tightly fitted clothes and tans on everyone, gleaming cars that no one can really afford, all of the wealth that goes unnoticed. The variety of faces, side by side, wearing the same anxious expression, anticipating their checked baggage.

An invisible fence of fear prevents D. from ever seeing all of this. Because of where she was born, she cannot hope to glimpse other countries, even if she could ever afford it. The generalized fear of greater numbers and the potential to overwhelm the system; it sounds familiar to the AIDS epidemic, and what prevents one person of the masses from being helped.

And so the production phase ends; but there is still much to be done. Screening the hours of footage, catching the right seconds in each terrifyingly miserably joyfully unforgettable day. I can't wait to see it, to let the story flow, the twinges of regret pinch and the beautiful mistakes surface, and the satisfaction to have it all make sense to other eyes. Fundraising for post-production will also keep us busy, when the real expense of film transfer for festivals needs to be taken care of. But most of all, we hope that you (yes:you) feel proud of what you have made possible. You are reading this. You have contributed to making this, falling in any multitude of definitions of the word 'support'. Families have been helped, love has been built, hope has been realized into years of 'normal' life. In this case, 'normal' is a truly exceptional state. It should always mean that, but never does until it gets taken away. Individuals, advisory board members, foundations: this is yours. In the words of Vusi: You. are. gorgeous.

In the meantime, I'm revelling in the lush grass where my parents live, the humidity, in all of the things I couldn't do: run, go outside at night, drink 100% orange juice, wear trousers. Still bruising unsuspecting pedestrians by walking on the wrong side of the sidewalk, but my brain should go rightfully backwards again, sometime soon...

eleven seventeen in durban,

and we will see our families on Monday...very happy news. But sad to think of all of this that is real and around us now disappearing so fast. I can't complain about the speed of travel these days, but when you no longer feel the actual distance between it all, it's hard to believe one place or the next. We just got back from listening to some jazz at the Bat Center, glorious to hear live music all around, in a beauty of an old building that has been converted into numerous ceramics, printmaking and craft studios and galleries, a music venue and bar. It was teriffic to meet up with Cazie again, to meet her mythical and fantastic boyfriend, to talk about great films with them, to be out at night by the docks. Earlier today we played in the warm waves, then lay on the beach quietly. City noise can be soothing after so much silence. Noises of aliveness are so nice.

what's left

Lara died the day before we arrived back in Bergville. She was that necessary little bit of silliness that greeted us when we came home every evening, bright blue eyes and fluffy tail held high as a flag for every home on our street that she claimed as her own. The little dog that followed us everywhere we walked, whether we wanted her to or not. People offered money for her, stopping their cars on the highway, the supermarket manager gave her bits of beef. When the sun rose, she pawed at my window and howled to be let inside. She jumped in the bed and tore holes in the blue sheets. The muddy paw prints will stay on the window, as will the hole in the yard from her lengthy snout rubs. I'm not a dog fanatic, but there is less reason to laugh now without her.

Friday, we crossed the border into the country of Lesotho, a tiny island of monarchy enveloped in South Africa. It felt militaristic and cold; we were threatened with arrest three times, and came back through SA singing 'Nkosi sikelel' iAfrika' in our hearts with relief...it was Vusi's first international border crossing, his first time to be questioned like a criminal for being born at the wrong coordinates. Silly to be bullied by a country the size of Maryland, but then little countries have been proven to push around entire continents. The trip was made even more painful in that we've exceeded the 12,800 km allotted by the car rental company; we're well over seven thousand miles, over two trips across the US. It gives an idea of the physical distance between the community and clinics. Two Peace Corps volunteers are set to take over our flat; but they'll be forbidden to drive, because too many people have been killed in road accidents here. It's hard to imagine how they'll possibly be able to do anything; we ended up learning to drive stick on the opposite side of the road out of necessity, because sometimes the ambulance just doesn't come. And I hope they've got two and a half years worth of really good books, because there's no nightlife for hours around...

Drawn out goodbyes and the guilt of leaving are making the thought of going home all the better. All of the shouting at our loved ones through crackling phone connections and fickle internet access will not be missed. But the best thing that came from this communication isolation was the rare opportunity to focus solely on the present situation, being unable to obsess over the future. Day to day survival is still the name of the game here, as it always has been. Taxi service interruptions, missed appointments at clinics, missed refills on pills...these are the predators that have replaced the lions and rhinos now behind electric wire in game reserves. D. has the alarm watch, the calendar, the will to adhere, and the support of her bright, attentive sister. MamMlangeni's family has the continued support of her sister-in-law, but sustained financial support for the children will be the biggest obstacle without MamMlangeni's pension.

We both feel that this is the best thing that we've done, so far. In the worst possible scenario, everyone would have died. In the best, everyone would have lived. We ended up in between. Regardless of the outcome, the film would tell a story, and it has become a little more realistic than the optimistic we were shooting for. It will still be positive and hopeful, not just another passive gaze at the suffering of others, ranting off statistics and leaving you feeling even more isolated and helpless in the situation; besides, nobody wants to spend an hour and a half of their free time watching that. It will clarify the obstacles to halting the epidemic, why successful solutions in other countries can't work here, and what does work and what is being done to encourage or discourage that. The whole picture is so overwhelming that you can easily sink into feeling disillusioned and bitter, but it seems to be in isolating the little steps to stopping things that you can manage to make progress. The lasting activists I admire accomplish so much more at the grassroots.

And it will be a visual-audio-sensory feast...

robots

That's the name for traffic lights here; if only they moved and blipped and served you finger foods...but I'm already wary of all of these wireless devices that communicate with each other, whispering plots against us warmbloods with their little blue teeth. No robots in the Drakensburg...or internet cafes, where I've spent about an hour deleting hundreds of missed messages over the months...oof.

While we've been hiking in the Drakensburg, sighting several varieties of houseplants in their native habitats, the botanical gardens in Cape Town formally introduced us. The king protea, the big, pink, fuzzy national flower of South Africa, presided over the downward sloping site at the base of steep mountains, with jaggedy tips eternally blurred by clouds.

We dined at a tasty gypsy joint to celebrate Konrad's 27th birthday, where he was crowned with a tiara and serenaded. Stopped along the little beach towns along the Garden Route...a restaurant built on legs over the sea, where watching the night tides slowly roll in and dissipate was mesmerizing...wading through a flooded road, to see if the car could make it through...elephants crossing in front of the car at Addo Elephant Park, a turtle crossing the road with an ostrich...warthogs that resembled distinguished old fellows, sans monocle and pocket watch...

Sad to see this break come to an end, but it's been essential to getting some outside perspective on the situation we were immediately immersed in, and to appreciate the bigger picture of what and who else makes up the country. Pockets of conspicuous consumption along the coastline, luxurious things that many South Africans will never see, between hours of untouched hills. Silvery menorah trees. Hoping the inevitable mini malls and crowds of tract homes don't come too fast. I forgot to mention that the Sunday before we left, we celebrated D.'s 33rd birthday with the gigantic cake pictured. She was thrilled to receive the lovely digital watch, kindly provided by Sarah's parents from overseas, that has an alarm that is set to go off at 7am, the time she needs to take the pills, for the rest of its life.

It's ten thirty in the evening, and I sit in the most elegant bedroom I've ever been in, with a bed with more pillows than I know what to do with, at a chic bohemian B+B in Durban. Alicia Keys slept in this bed a few weeks ago; yet it's the same price as a cheap motel room in the States. The French doors are open, with warm air coming in through the spiralling iron gates. The lights of Durban glitter on the horizon. A soft cat is rubbing against my legs. I have a cup of tea and unlimited wireless, so at last we have some visuals...

cause of death: meningitis

So it said on the death certificate. The test was supposed to have taken place a month ago, but the nurses forgot. All of those little dominoes, to this.

Any anger I felt left inside drained away at the funeral. A yellow and blue striped tent was set up, connected to the rondavel. When someone is stabbed or shot, the tent is not connected to the home, to ward off bad luck. The sun was warm and bright.

Another week without internet passed, another apology for lateness in responding to my good friends and family. We made it to Cape Town yesterday, for a needed break to see more of the country beyond KZN...one hour after arriving, I fell in love with this city, bathed in golden light, pink clouds gathering around the gigantic mountain in the middle of the city...green and blue lovebirds canoodling in the aviary in the park. It's a beautifully designed city, reminiscent of Havana for Sarah, and New Orleans for me. It took a two day drive through flatlands with no radio stations to get to the swisslike snowcapped mountains around it. Completely different feel here...

Konrad has proved himself an excellent makote (young bride), washing clothes, fixing meals, and providing mountains of Cadbury's Dairy Milk Chocolates...Vusi valued him at twenty cows. It's his birthday today, so we'll take him out for a swanky meal. Being the soundman that he is, he noted that 'sanibona'('hello')sounds like 'Sonny Bono'. I hope he doesn't say 'Cher' instead...