by Judy Steel
I had left Africa bruised and battered emotionally, and coming home to Australia had made me confused and upset at times. But being back in Allan’s company had rested and healed me. In October 1999 he organised my flights and in March 2000 I returned to Uganda.
Chapter Nine
I WAS A MIX of emotions on the flight. It was six months since I had left and I ached to renew the intense relationships I had formed in Africa. But there was also a part of me that worried about the reception I would receive. I was wary of being taken for granted and wasn’t sure if I would meet my own expectations of making a difference somehow. A lot of people back home seemed to think I was working miracles. The church had given $4000 for me to use in Nakulabye and I didn’t want to let them down. All my life I had known exactly what I was doing, where I was heading and what I wanted to achieve. I was forthright and focused and, at times, too outspoken. But now I truly believed that God was remoulding me and in doing so cracking a hard shell I had built over many years. I still was unsure exactly what my path would be, and this frightened me. To be honest, part of me yearned for an easier road to walk.
My arrival at Entebbe was so joyful. Frank, Michele and Hannah Heyward were there, along with Edward and his youngest daughter Olivia. I sailed through customs again and was re-immersed in the smells, heat and noise of the bustling city. Amid the chaotic traffic, a young boy ran behind the wheels of a large truck that was belching black smoke while grinding its way up a gentle hill. His job was to put rocks behind the wheels to stop the truck sliding back.
I booked into the Namirembe Resource Centre Hostel, a facility run by the Church of Uganda for girls attending the nearby secondary school. They house about sixty girls with six single rooms for short-term visitors. It’s popular with Western travellers and workers because it is safe, clean and cheap, but the Pentecostal church across the road seemed to have almost non-stop singing and praying from about five o’clock on Saturday afternoon and finally ending twenty-four hours later. The noise was excessive and intrusive, but requests to lower their amplification in the past seemed to have been ignored. The packs of dogs that also howled and barked to accompany the worship made such a racket that one night I prayed the dogs would be struck dead. Then I thought God wouldn’t be happy with that so I revised the prayer and asked for an outbreak of canine laryngitis.
Eventually I met Anthony, the young pastor from the Pentecostal church over the road. He in turn introduced me to a woman named Judy Howe, a missionary from Toronto who was also staying at the hostel. She had an infected foot which I treated, and during the conversation she mentioned she was moving into a little house and asked if I wanted to share it with her. I said I would prefer to stay at the hostel because it was close to the clinic, thinking I would need to know her a little better before making such a commitment.
Edward took me on a tour of his hospital, which he hoped to complete in three months. This seemed rather optimistic: the bricklaying was finished and the roof was on but he had run out of money, and there were no doors, plumbing, electrical wiring or windows. He also had no idea where his equipment and furniture was going to come from. I had been given a microscope in Australia for Edward and he was very impressed with it. He had a tiny laboratory in his old hospital and this would enable him to do more blood tests and diagnoses.
My first day back at the Florence Nightingale Clinic in Nakulabye started in an unusually quiet way because Alice was away. Suddenly it burst into life when children came running from everywhere and showered me with love, running their fingers through my hair and holding onto me tightly. Cheeky little Thomas from next door refused to let go; he was very thin and I feared he might have AIDS. He quickly became my shadow, following me as I consulted. I handed out some sweets and promised to return the next day to check them all out. When I did there was a second outpouring of joy from the children and mothers. One woman sang while others chatted and laughed. Some of the little ones looked plump and gorgeous, while others were clearly not thriving.
Robina, Rita’s sister and carer, came into the clinic looking thin and pale in the final stages of AIDS; I hadn’t realised the previous year that she was also infected. She told me that Rita had died and that she sent me her love as she slipped away. Afterwards her brother ransacked the house and stole what money she had, and she was to be evicted from the room she had been renting. Unfortunately, in Uganda this callous act of looting after someone has died is very common. Robina asked me to visit, and the next day I found her being looked after by her sister Margaret, who had moved back from her village up country to be near Robina. I paid the A$100 Robina owed in back rent and explained it was a gift from people in Australia. I never had any problem using the money this way because it had been given to me to use where I saw need. I knew my church family would not want to see this woman evicted from her tiny room while she was dying of AIDS.
I felt such sadness. The people of Uganda were dying all around me and there was so little I could do. During the day I would steel myself for the sights and sounds of unstoppable suffering, and in the evenings I would pray but most often just felt powerless and sad. In this state I wasn’t eating properly. Every time I tried to eat a larger meal I would feel sick or bloated, so instead I snacked on biscuits, two-minute noodles and my trusty jar of Vegemite.
I found solace at All Saints’ Cathedral where one Sunday morning the service seemed designed for me. All Saints is in the city of Kampala on top of a hill overlooking the business district and it holds services in English. I had happened upon it almost by chance when I was catching a bus to another church one Sunday. A car stopped to offer me a lift. Inside was a family on their way to the Cathedral which became a comforting place for me. The first hymn was ‘Great is Thy Faithfulness’, which came as an answer to the anguished prayers I uttered at night. The sermon was based on Exodus 3 and 4, where God directs Moses via the burning bush. I decided I would no longer worry why God hadn’t called someone better qualified or more holy than me here. The reality was I felt that God had chosen me and I had said yes. On the way home I bought a large bag of fresh fruit to eat, which left me feeling spiritually and physically in much better shape. All Saints was to become a regular place of worship where I found peace and renewal.
My first meeting with Alice didn’t convince me the Florence Nightingale Clinic was being managed any better than last time. Alice had a wonderful heart but no mind for money, and many documents recording the clinic operations were pure fiction. One day while waiting at the Nsambya hospital I saw Agatha, the nurse from Nkumba – the clinic by Lake Victoria which I had visited with Edward and Alice. Alice visited this clinic from time to time as part of her work with the Florence Nightingale Clinic. Agatha told me Alice had just sacked her. When I later asked Alice about this she said Agatha had been stealing money and ‘other things’. I had no way of knowing if this was true or not, but the more I dealt with Alice, the more concerned I became about the transparency of the operation. Honesty and accountability had always been cornerstones of my work and I felt that I couldn’t work somewhere where that was secondary. I was learning fast that I would only find out the right answer if I asked the right question.
In addition, I had growing fears about the basics of the way the clinic was being run. One day I found tablets in a container marked ‘dexamethasone’, which is used quite freely in Uganda for severe inflammatory conditions, and so dispensed them as such. I immediately realised by looking at them they were not what the label said. Thankfully it turned out they were only paracetamol, but they could have been something that could kill a child. I also discovered that Alice had been using clean but unsterile needles for injections, an enormous malpractice in a country so rife with HIV. A nurse in Australia would never use anything that was unsterile. I was so angry about this dangerous lack of standards that I had to walk out of the clinic for the rest of the day. This didn’t seem to bother Alice at all.
Life at the hostel was always unpredictable. The water went o
ff for two days without explanation, so showering became a very basic experience with a twenty-litre container of water, a bowl and a coffee cup in the cubicle. Outside the cubicle was an electric hot water jug, and the trick was to get the temperature and the amount right to tip over your head – especially difficult when your hair needed a wash.
Although it was noisy, the hostel provided an opportunity to mix with a small section of the expatriate population of Uganda. Along with Judy (before she moved into her cottage) there was Julie, a lawyer from the United States, Jenny, a doctor from the UK, and Venestre, an economist from Burundi. Several times, Julie, Judy and I went out shopping together or for a meal, and often on the way home we would buy fruit and make an enormous salad back at the hostel for dinner. We also discovered a superb local drink made of crushed sugar cane juice and ginger. After Judy moved into her cottage we christened her new barbecue: I bought a Nile perch as long as my arm and grilled it along with potatoes, eggplant, onions and mango.
Frank and Michele Heyward had written to me in Australia about a gorgeous four-year-old orphan called Suzan. Her mother had died in childbirth and her father was killed in the war in Rwanda, so Suzan was being raised by her grandfather in a village outside Kampala. As a toddler she had been badly burnt when she fell over a charcoal cooking pot and now had horrendous keloid scars to one arm, all of her trunk and her right upper leg. Keloid scarring is hard and irregular and will sometimes form after an injury. It is quite prevalent in Uganda and often has the appearance of a thick, coiled rope. Suzan could not stand up straight because the worst of the scarring was in her right groin, and this contracted and pulled her down. If tapped, the scarring on her chest made a loud hollow noise.
After hearing from the Heywards, I was able to raise a few hundred dollars in Australia before I left in the hope that Suzan could have surgery to release her scarring so that she could stand upright. Suzan was now an orphan and had been placed in a boarding school on the outskirts of Kampala to escape the [poverty and harshness of village life. It isn’t unusual for children in Uganda to go to boarding school at a very young age if there is money to pay for it. When I visited I gave her a doll and a dress from ‘Mama Fiona’ – my daughter had decided to sponsor her schooling. She sat on my knee and hugged the doll. The matron said they all loved her and she was very bright.
Early on this visit to Uganda, I had read in the paper that a team of Dutch plastic surgeons and staff were visiting Kampala. They came regularly and operated at the St Francis Hospital at Nsambya, a privately operated Christian hospital. I took Suzan along in the hope they could see her, but I feared there would be too many cases and told myself it was unlikely. My fears were increased when we arrived and saw hundreds of people waiting in a line, many with gross deformities. But to my surprise the doctors saw Suzan and booked her in for surgery the following day. She hated every minute of the whole process, screaming and clinging to me because she was terrified of hospitals and doctors due to the painful treatment she’d received after the accident.
The day after her surgery, Edward and I went to visit Suzan in hospital but found her outside the building at the latrine – Edward gave her carer a swift lecture on hygiene and infection. I was responsible for Suzan’s admission and her expenses and had raised money in Australia for just this type of situation. I discovered from the staff that they intended to discharge her the following day, so I paid for an extra week in hospital, some new clothes and a potty so the carer wouldn’t take her outside again. When I sat down on her bed, Suzan clung tightly to me but wouldn’t speak. I sang some nursery rhymes and the little darling slipped straight off to sleep.
Suzan had hope for the future because she was getting an education and appropriate medical care, but so often in Uganda the opposite is true. Robina was still suffering greatly as her body broke down in the final stages of AIDS. I bought some painkillers from a pharmacy and injected them to give her some relief. The need for medicines of any kind, let alone palliative care drugs, was constant in clinic work. Edward showed me a pharmacy in the city that sold good quality medications, and I bought a lovely woven backpack from a street market which I used to pack them into for the walking clinics.
Often, as we walked through slums and villages, people dressed in rags would silently stretch their hands out toward me from the shadows. Groups of older women, many of them widows, lived in squalor and begged for food. I gave away about forty dollars in tiny amounts, and you would have thought I had been handing out million-dollar cheques. I was aware that this was not the answer to their poverty and need but they were hungry and cold. I was learning the difficult lessons of life here in the slums but it was not in my heart to say go away, starve, stay cold, I cannot help you. I did what I thought was right at the time but was to learn that I could do it differently in years to come. One lady lived in a room less than two metres square, with no windows or even a blanket to lie on at night. Nearby lived a thirty-five-year-old named David, who had gaping, pus-filled wounds from his groin through to the rectum. The condition was most likely caused by syphilis and his quality of life was zero. It was so far beyond my ability to treat him that I found a way to get him to the hospital with a letter asking for help.
About a fortnight after I had arrived, Edward stunned me with the news that his wife, Rose, was in hospital in labour. She is a big woman, but no-one knew she was pregnant aside from Edward – not even their five other children. She gave birth to a two-kilogram baby girl by caesarean section and named her Judy. I was overjoyed at the honour. Edward told me it was a way of ‘legalising’ my involvement in Uganda. Many days I would slip around to visit Rose at home and have a cuddle of little Judy.
In the weeks that followed the delivery, Rose struggled with a bout of malaria. Edward believed she caught it while giving birth in Mulago Hospital because the hospital has no screens on the windows. Nowhere is safe from the mozzies and, according to the Ugandan Ministry of Health, 95 per cent of the country is exposed to moderate to very high transmission levels of malaria. Another awful statistic in a country that was full of them.
Chapter Ten
EDWARD AND I HAD developed a good working relationship and I admired his accountability and honestly. He had invited me to work at the Busabala Road Hospital and so I started a walking clinic each wednesday while remaining at Nakulabye for the other four days. The Hospital was set in Najjanankumbi, a slum village similar to Nakulabye. I was always accompanied by two or three widows who would take me around to visit the various patients and along the way teach me local customs, culture and language. I enjoyed interacting with the widows and the people in the community. Busabala Road teems with humanity. Little road side stalls sell fruit and vegetables while tiny shops with iron bars over the windows to prevent robberies sell tea, sugar or flour. Along this road there is also the best japarti stall I know and we would often stop for one on our walk. A japarti is like a bread wrap cooked on a hot charcoal stove. They are delicious just as they are but sometimes when I was at the hostel I would buy one from the local trader and fill it with avocado, tomato and onion.
I had been back in Uganda now for six weeks and began to realise that if I was to do something on a permanent basis it was going to be here in Najjanankumbi and not with Alice at the Florence Nightingale Clinic.
Edward spoke to me about some spare land next to his hospital and the possibility of developing an HIV/AIDS clinic there. It was exactly the same thought I had already been entertaining. I enjoyed Edward’s company and admired his work. He was passionate about helping his people and I knew we could work well together We could set up a clinic under strict protocols, where anyone would feel comfortable coming for advice, education or treatment. After realising our shared goals, my discussion with Edward also encouraged me to go a step further: I realised I would need to set up an organisation so I could make my own decisions and collect my own information about Uganda and Ugandans. It was a turning point for me.
These thoughts swirling around
in my head had to take a back seat to the daily needs of the people of Kampala. At the clinic one morning, Robina’s sister Margaret came in with a huge abdominal mass. I feared that, like her sister, she too was slowly dying of AIDS. After I arranged for her to see a doctor, another woman arrived asking me if I would take care of her children when she died. She seemed to think that perhaps I could take her children back to Australia with me and I had to gently tell her that that was not possible. There seemed such a need for an organisation to deal with the orphans who were such a vulnerable result of the AIDS epidemic.
I found a certain resignation to the disease among young people. They didn’t seem to care that they had AIDS and showed almost no emotion in discussing it. It made my heart ache because they didn’t expect to live and so had no hope. At times I wished some would die quickly so that they would stop suffering, but at other times I knew their lives could be extended with better care and treatment.
As I watched Robina suffer I grew to hate AIDS. I hated the sicknesses that it caused, the suffering and the despair. In a country teeming with life, I found these prolonged stages of death senseless. I hated too that I was unable to help and the frustration that brought. I couldn’t see why God didn’t just gather these people quickly to him rather than allowing them to continue in agony.
I eventually took Robina to Mulago Hospital where I said goodbye to this beautiful young woman. In less than twenty-four hours she was dead. Alice and I went to pay our condolences to Margaret and when we arrived I was startled to see a coffin already outside the door. It was crudely made of pine and lined with a cotton cloth, the wood was still tacky from the varnish. Robina’s body was inside the house on a mattress on the floor, covered with a cloth. The room was crowded with women while the men hung around the door and the coffin. I sat on the floor beside Robina’s body along with the women and we all wept for the loss of this beautiful woman. It became apparent that the burial couldn’t take place because they didn’t have enough money. Margaret had only half of the A$50 needed, and so my final act for Robina was to pay the rest of her burial costs. Afterwards I arranged for Margaret to be tested for AIDS but expected that she was already well advanced. People told me the level of HIV infection in the Ugandan community was falling, but I only saw the results of people who had been infected years before and were dying. Robina’s death haunted me. It often came into my mind when I least expected it, and mixed with the grief was the guilt of not having done enough to help. I wrote to Allan and Gillies about it and hoped the feeling that I had let her down would subside.