by Judy Steel
One worried woman arrived with her ten-month-old son, William, who had lost a lot of weight. His chest was rattly and he had a rapid pulse. I knew he had a chest infection and needed antibiotics, but they were back at the house, the only medications I had were cough mixture and Panadol. I should have picked him up and taken him with his mama to a hospital but it was my first day and I didn’t understand the Ugandan health system. I held the little boy and came close to tears. I asked his mother to return the next day when I would bring the medications from OPAL and she began crying. Through Alice’s translation she told me she had never known caring before and thanked me for showing love to her and her baby. I realised in that helpless moment that William and others like him were the reason I was in Africa.
The next day I returned with the medications. Already the patients had started calling me mzungu Judy, meaning white person Judy. I held a two-week-old baby girl who was a tiny two kilos at birth, but her weight had dropped dramatically and her temperature was 40°C. I feared she was dying of pneumonia and told her mother to take her straight to hospital. The mama walked away crying while carrying her precious little scrap of humanity.
William looked a little better and his mother was smiling in her gentle way. After his first dose, she continued bringing her son to the clinic four times a day for his antibiotic mixtures. They lived in terrible conditions and although there was some improvement, William wasn’t overcoming his illness. One orphaned baby was brought in by his grandmother. She could only afford to give him ‘dry tea’ (tea without milk) and porridge. I feared he had little hope of survival. I had to remind myself of the lesson I had been taught at Tabor College – that I can’t save everybody.
A week later I was told William had died and had been buried the day before. I was sort of prepared, but I still wept for him and his mama. William was the first Ugandan baby I had held and so I desperately wanted him to live. I had come to Uganda to make a difference to a child and he had died and it was shattering. I visited his mother, Tewopisita Nalwadda or Tewo, a beautiful woman in her late twenties. To find her I walked for five minutes from the clinic through the slum. Part of the journey involved squeezing between two walls about half a metre apart while straddling an open drain; I could only imagine what it would be like when hit by tropical rain. This was my first walk deep into the slums and it was shocking. Rubbish was piled high with plastic bags full of everything, including faeces. I jumped over used condoms. The gutters were full of stagnant water and the combined smell assaulted my senses. There were tiny food stalls crammed between noisy video shops where movies were played blaring out into the street. Meat lay uncovered on wooden counters crawling with flies. Gorgeous but grubby little children ran out and touched me and ran away because I was a mzungu and they hadn’t seen one before.
Tewo lived in a room about two metres square, with a small two-seater lounge at one end and a mat and a few pots on the concrete floor. Tewo’s husband had been murdered when she was pregnant with William, and her parents and siblings were all dead. There was no-one left to comfort her and I couldn’t imagine the grief and sorrow she was suffering. I felt overwhelmed by the widespread loss of human life in this country. In addition to her grief, Tewo faced eviction from her tiny room if she didn’t pay the equivalent of $80 for four months rent.
Tewo visited the clinic a few hours later complaining of a headache and fever, and I suspected she was coming down with malaria.
Chapter Four
I NEEDED TO UNDERSTAND how best to treat malaria so approached Dr Edward Ssembatya who was involved with the clinic in a voluntary capacity. He had previously come to teach me about ugandan drug laws, during which he offered to help with some of the red tape so future medications could be brought in formally and possibly in larger quantities. He was in his forties, quietly spoken and gentle, and what impressed me from the very first was his love for his fellow Ugandans and the complete respect that he showed them.
Dr Edward, as he was known, ran the Busabala Road Hospital about ten kilometres away in the suburb of Najjanankumbi, with an outpatient department and a training centre for nurses. It was a 24-hour facility open to anyone, and Dr Edward performed minor surgery and normal deliveries, but more complicated cases were transferred to a major hospital. After examining Tewo, he asked if I would visit his hospital because he wanted advice on administration. In reality he wanted advice on managing nursing staff – something which was second nature for me. I quickly discovered there were many differences between nursing staff in Uganda and Australia. Here they were paid a pittance and didn’t always have a strong work ethic.
Gaining access to even the most basic medical attention is beyond the reach of most poor Ugandans, so most have to suffer in silence. While they might hope they would get better, there was a resignation about death because it was everywhere. In Australia, one in 200 babies does not see its first birthday; in Uganda, one in every ten babies die in their first year of life. The diseases that kill them are pneumonia, gastroenteritis, malaria, HIV, measles and malnutrition. But the underlying reasons for their deaths are poverty, powerlessness, and a lack of education and access to resources.
Amid this atmosphere, the idea that someone would offer even the slightest help was greeted with rejoicing. I was getting adept at catching buses and getting around Kampala. I was also learning how to bargain at the street markets and try local foods. I was missing Australian food, especially cheese, which was prohibitively expensive. I worked a full eight hours at the clinic each day, stopping for lunch of meat or fish cooked like a stew with rice or matoke. The Florence Nightingale Clinic staff gave me the name Kisakye (pronounced chis-ar-chee), which means grace, full of God. When they first translated it. I felt humbled: the Ugandans were offering up so much love and were so grateful for what little I could do for them. One woman in her forties came in with gynaecological problems. A doctor had told her that if she had a baby it would fix things, but I feared she had endometriosis. She already had seven children and when I asked if she wanted more, she cried, ‘Definitely not.’ I arranged for her to see another doctor for advice and treatment, remembering Anthony explaining that if a woman can delay becoming pregnant by a year after a birth, then it dramatically increases the chances of her next child being healthy.
Family planning seemed to be an important health issue. Patients regularly came in suffering from sexually transmitted diseases, particularly young people with syphilis. I was learning fast about the sexual habits of Ugandans. Girls aged as young as ten will prostitute themselves for the equivalent of ten cents. When I asked one of the young Muslim nurses at the clinic about how young people deal with and understand HIV she replied, ‘During the day we remember but at night we forget.’ Husbands go away looking for work and have unprotected sex and then come home and infect their wives. Rape is a common crime. There was a desperate need for an STD clinic, not only for treatment but to explain the diseases and how they could be prevented from spreading.
One day, after a busy morning, it started raining so by mid afternoon the clinic was empty. I went with Alice to visit Tewo. She greeted me by calling me her mother, and I called her my other daughter. I had been thinking about how I could help her, so I gave her money for food and an offer of A$20 to establish a business selling second-hand clothes in the market. I wanted to keep the offer quiet so I wouldn’t be inundated with others looking for money, but I also made it clear I wanted a weekly update on how things were going.
The next day I went with Alice and a clinic nurse named Recheal to see Tewo’s landlord, as he had come to Tewo’s house and announced he wanted her to move to another room because hers needed renovating. I insisted on inspecting the new room and found it was filthy, with no window, lock or door handle, and backing onto a video room where the locals watched movies. As the TV blared out full-blast at 10.30 in the morning, I told him I was not allowing her to be shifted into this room. The landlord followed us back to Tewo’s and sat down on the couch, and for some r
eason I asked Alice to enquire if he believed in Jesus. He replied he did and that he was born again, so I asked him to treat Tewo with respect and a gentleness as Jesus would have. To my amazement this turned things around, and he wrote in her rent book that he and his family would accept greater responsibility for her to live safely and, when the time came to renovate her room, they would ensure she had appropriate and free alternative accommodation until it was ready. I promised him I would pay the next four months rent when the renovation was complete, being able to give Tewo this start with a donation that friends in Australia had given me before I left.
My visits to the clinic usually began with a series of hair-raising taxi rides. Taxis in Kampala operate like a minibus service and take as many passengers as they can squeeze in. It was best just to shut my eyes and pray when the driver hit the accelerator and launched into the traffic. I have no idea how they manoeuvre their vehicles into the spaces they do.
I had slipped into the role of Alice’s assistant very easily. I meant a lot of kudos for her because a mzungu was rarely seen in Nakulabye. My time was spent visiting those with AIDS and generally helping in the clinic.
Once a week Edward came to consult, and fortunately he was on hand one morning when an eighteen-month-old was brought in who was fitting and had a temperature of thirty-nine. Edward diagnosed malaria; if he hadn’t been there, the child would have died. A week later the mother returned with the baby, who appeared fully recovered and sat on my knee, bouncing and laughing.
Another baby was brought into the clinic when he was about two months old and dying of pneumonia. Little Fred was filthy and had only one set of clothes, and he desperately needed help. I gave his mama the money to get him to hospital and, after he came home, she brought him to the clinic every day for me to check. It was a joy to see him thrive and grow into a gorgeous little boy.
Edward’s presence made such an enormous difference that it confirmed my growing concern that this clinic didn’t follow basic primary health care principles. There was a pattern of dangerous practices such as multiple babies being immunised with the same needles. In addition to delivering and immunising babies there was some counselling for those with HIV/AIDS, but mostly they just referred people on and gave out paracetamol. Although I was not running the clinic I felt responsible for the correct handling of the drugs I had brought from Australia. I discovered one of the nurse aide’s had dispensed medications which I had specifically said were not to be – there was no harm done but the lack of understanding frustrated me. I arranged for a cupboard to be built so medications could be locked away.
In addition to the operational aspects, I was confused by the structure, financing and accountability of the clinic. I couldn’t get straight answers on these matters, other than that the clinic existed on donations and minimal payments from some patients (the equivalent of ten to fifty cents per visit) and that the staff were volunteers. The electricity was regularly cut off and I couldn’t find out if it was because of non-payment or dodgy wiring. One day, two packets of examination gloves appeared which were labelled as free from UNESCO; this bonus was treated as an example of how the clinic operated on donations. When I asked Alice who gave what from where and how or if things were paid for, her answers were elusive. I was to discover this was normal with her and eventually I came to believe I was being lied to. This frustrated me greatly because the lack of accountability seemed to be reflected in the nursing. I decided I wouldn’t make any more commitments until I got to the bottom line. I would not be used.
I decided to take up Edward’s invitation to visit his hospital in Najjanankumbi. He sent his car to collect us and I went with Alice and two of her nurses. At first I was appalled at the tiny eight bed hospital. Edward greeted us in his modest, sparsely furnished office. The nurses from the Nakulabye clinic were brought there for experience and worked eight-to ten-hour days, seven days per week. They were paid very little, if at all, but had accommodation and food.
Patients at the hospital paid a fee for treatment and medication. Through these funds Edward had built the tiny hospital, but he had bigger plans and construction was under way on a new thirty-bed hospital next door. The work was going ahead in fits and starts, depending on Edward’s income; when he could afford to buy some bricks, the next section would begin construction. The plans were eventually for a three-storey building designed around a central open courtyard. It was still just a shell with a roof, and lacked plumbing, electricity, doors and flyscreens.
I had no idea what lay ahead for this hospital, nor how it would change so many lives over the next few years both in Uganda and Australia.
Chapter Five
ALTHOUGH MOST OF THE work at the Florence Nightingale Clinic was with mothers and babies, I was soon confronted by my first AIDS case. Timothy, a man aged about thirty in an advanced stage of the illness came in, anxious and desperate. I could do nothing for him medically – the expensive drugs available to HIV patients in the West were unavailable to the poor in Africa – but we talked about his condition and his life. The longer we spoke, the more he relaxed. I promised I would visit Timothy at home after work at the clinic. After he left I was surprised at how close to God I felt and that I had been given the right words to say. I continued to visit Timothy regularly and we became friends. He died a few weeks later and I realised with sadness that this was going to be the norm. I would just get to know someone and then they would die. I was grateful for my faith because it helped me cope. I found much-needed peace in the Bible, reminding myself that God loved the poor, sick and the lame and I knew he also loved these poor beautiful people who were dying of AIDS.
HIV/AIDS is the plague of Africa. It does not discriminate between rich and poor, old or young, and the stigma attached to it has frustrated public health efforts. While the epidemic spread across the Western world, by the late 1980s public health education and pharmaceuticals began slowing its progress. But in sub-Saharan Africa, the most heavily affected region in the world, there were an estimated 22 million HIV cases by 2007, with that number growing by almost 2 million per year. It is almost impossible to describe the toll the infection takes on communities. The additional heartbreak is to see innocents infected: more than 90 per cent of new HIV infections among children are transferred from mother to child. Half of those children born HIV-positive will die before their second birthday. In some remote areas of Uganda, unofficially up to 90 per cent of the adult population is HIV-positive. There are lost generations, with the very old looking after the very young. All those in-between have died of AIDS.
While some Africa governments have ignored AIDS, Uganda has curbed the spread, but this is not to suggest it hasn’t taken an enormous toll on the nation. The first case was diagnosed in 1982 and by the mid 1990s, 15 per cent of adults were HIVpositive. In 1986 the Ugandan Government made its first effort to control the spread of the disease, and President Museveni went on a national tour promoting what was called the ‘ABC campaign’, which had as its message:
Abstain from sex before marriage
Be faithful to your partner and use
Condoms.
By the late 1990s the number of cases seemed to be on the way down, but the terrible time lag between infection and death meant that, even if halted overnight, the damage already caused would be felt for decades to come.
Those with AIDS in Uganda suffer terribly as their condition deteriorates. I visited one man named Katumba who had moved out of his house because his wife was having difficulty taking care of him. His pain was out of control, he was restless and she was frightened. He was living with his son and sleeping on a ragged mattress on the floor. No-one was really caring for him (although his wife did visit) and his bedding was full of grit corroding from the adjacent sandstone wall. He had been visited by nurses from Mengo Hospital, one of the major hospitals in Kampala, who had left some pretty useless pills. I gave him some more effective medication, cleaned him up and tried to make him comfortable and prayed with him. Katu
mba died the next day.
One day a young man called Dennis, who was the youth representative on the Nakulabye Council, asked me to visit his best friend. Jeffrey was twenty-eight years old and in the final stages of AIDS. He lived with his wife, Jennifer, and their ten-year-old son. Having worked in a hospice in Adelaide for several years, I thought I had seen every awful kind of death – but I was wrong. Jeffrey was dying in abject poverty and I had never seen such horrible bedsores; Jeffrey’s sacral area at the base of his spine was rotting flesh, right down to the bone – the wound was the size of a dinner plate. I asked Edward for some pethidine for the pain and bought a large bag of rice for Jennifer so they had something to eat. I visited twice a day and sometimes nurses from the clinic would come. We sponged him and at times he seemed almost unconscious and peaceful while this was going on. Then he would break out violently, shouting and screaming. Once he yelled, ‘Break the chains that bind me,’ and so we prayed and everyone in the room joined in. All I had left was prayer. I was so frustrated and angry that I could not do more for this suffering man. In the end I just cried. I had no more narcotics and so bought intramuscular valium from a chemist and gave it to him, promising to return in two hours. When I did he had rested and taken some nourishment. He opened his eyes and said kale – thank you.