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Lupus, a Cruel Disease that Permanently Changed my Life

Lupus, a Cruel Disease that Permanently Changed my Life
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SLE Awareness, May 2017

My teenage years were a mix bag of fortunes. I spent a lot of those years away from home. Being secondarily raised by my aunt, I struggled a lot with identity and belonging issues. I was raised by my aunt from the age of 8 years. This was done in order to instill my Xhosa cultural values, including learning the language of my father’s heritage, which in spite of having settled in Durban, he still practiced and spoke. I grew up as the only girl amongst 4 boys and there was no doubt that as the only girl I had a special place within the family.

Me, enjoying the gift of life

I was also special in the township because I was a loner, a “foreigner” (being of Xhosa heritage) and they were mesmerized by my body figure. They called me “u-Slender and tall”, a nickname that always  made me feel uncomfortable; as I wished to have the bodily curves that most girls in the township had. I was indeed the apple of my father’s eye. In my mind as a child, the close relationship with my father confused me to think that my mother didn’t love me as much. Only in the later years did I truly understand the nature of my her love. My father’s love, exaggerated as it was, only made sense to me when he passed away when I was 10 years of age.  I then began to understand that it was meant to be like that because he was not going to live long. He passed away on the 2nd of January 1977, a time that heralded a change in a lot of things with regards to my life as I knew it.

Me and my X-Factor

I spent the year following his passing in Umtata and the following year I had to go back to Durban to continue with my schooling there. At the time I had embraced the Xhosa way of life, the culture, the language and friends.  I however had to return to Durban, which meant I would have to relearn the Zulu way of living. Whilst in Umtata, I had sort-of experienced the life of living in a “free country” although it was a Homeland that was not really free, but it was to me a place of freedom of thought. I saw a different breed of black people than the ones I was used to seeing in the township of Kwa-Mashu. These “free blacks” were highly educated, owned big businesses and were not intimidated by, or fearful of white people. Their homes were not the typical apartheid four roomed houses, which were called “matchboxes”. These houses were large and modern, with electricity and waterborne sanitation inside the house.  

I therefore resented going back to Durban and Kwa-Mashu township, where I was made to repeat Standard 3 (Grade 5), which I had passed with flying colours the previous year only because I had not done isiZulu as a vernacular language. My mother moved me between two schools in one year and in both schools I did so well such that the tests and year-end marks of my classroom contemporaries were way below mine. I hated repeating the grade and I wanted to go back to Umtata where my cousins were. We we very competitive amongst each other and I loved the way they challenged me both at school and socially. 

At the beginning of 1978, I insisted that I wanted to go back to Umtata. My cousins were now all in Standard 5 (Grade 7). I refused to be a grade behind them and my aunt who was a social worker, pleaded my case for me at school. I was allowed to skip Standard 4 (Grade 6) and I went straight into Standard 5 (Grade 7). At last my life was back to normal, or so I thought. However, this perceived normality was short lived because a year later we had to go to high school and no plans had been made for me for my high schooling.  

On the other hand, my aunt had planned for my cousins to attend private boarding schools for their high schooling. This situation created a lot of anxiety and heartache for me, as it resulted in me being moved from my aunt in Umtata, to another aunt and finally to a boarding school at the rural Ludeke mission in Bizana. Ludeke rural village was a typical underdeveloped rural area, without basic living amenities like decent housing, running water, or waterborne sanitation; a rural of all rural areas.

I was there to complete my Standard 9 and 10 (Grade 11 and 12). In spite of the difficulties I managed to make it into the Top 4 academic performers in the school.  The reason I am highlighting this academic achievement is because the Top 4 performers in each year would be assisted towards entry into University. The school provided support with the application process, bursaries and scholarships, etc. So I believed that my future was set. However, during my final matric year, I started to get sick with flu-like symptoms that were accompanied by severe headaches, body aches and rigors.

Things that were yet to come…

I was taken to the nearest mission hospital in Bizana, called Greenville Hospital.  The hospital was about 25 kilometers away from my boarding school. It was in the middle of July and we had started our preparations for final Matric exams. I was admitted to this village hospital and they “diagnosed” me with pneumonia and the medication that was prescribed to me made my symptoms worse. My mother was called from Durban.  She was a professional nurse, who specialised in midwifery, who was practicing at Kwa-Mashu Polyclinic, a glorified primary health care clinic in the township.  The facility was poorly equipped and geared to attending to minor ailments and minor surgeries to deal with stab wounds and uncomplicated births.  Although my mother was just a professional nurse, when she got to Greenville Hospital and reviewed my patient records, she was convinced that I had been misdiagnosed.

In her anger, she shouted, “I don’t know what my child is suffering from, but I am certain that it is not pneumonia. I’m not leaving here without my daughter so please bring an RHT (Refuse Hospital Treatment) form and I’ll take my child away”. I am convinced that this spectacular scene went a long way towards ensuring that I was properly diagnosed and my life was saved. We drove through the night in a hired battered VW Beetle with my mother and my step dad. I don’t know where they had hired that Beetle, however it was not fit for the long journey back to Durban.  During that time I was drifting in and out of consciousness being rushed to King Edward V111 Hospital, which was 200 kilometres away. On our way back to Durban our hired car experienced mechanical problems and it broke down on the highway, as we were approaching Port Shepstone, which is about 120 kilometres from Durban.  

We were stranded on the side of the road for many hours and it was very cold. My step dad gave me his coat yet kept mumbling, complaining that  a stationary car was like a fridge. I also remember the big trucks whooshing past our car and almost lifting it as they passed. Eventually help arrived and proceeded and got to our destination, King Edward V111 hospital.  

SLE at a glance

Within a week of undergoing a battery of tests, I was diagnosed with Systemic Lupus Erythematosus (SLE), a rare chronic disease in which one’s immune system attacks its own bodily organs. King Edward V111 Hospital was one of the premium teaching hospitals in the country then, although I doubt that one would use the word premium to describe the institution today. The year was 1985 and they had inappropriately placed Lupus management within the Rheumatoid arthritis clinic, because the presentation of the two conditions was similar.  I remember that at the time they treated me with Voltaren amongst other medications.

It was towards the end of my teenage years and I was in my final year of my high school studies. I had now been at the hospital for two and half months. I was starting to get agitated, as the final exams were fast approaching. I was dead set on writing and not missing the matric year exams. I was discharged and went back to school just as they were preparing for our “Matric Ball” which was called a Farewell ceremony then. It was a warm ceremony that doubled up as a welcoming party for me. I managed to write and passed my matric exams; however, I did not achieve the matric exemption that I had coveted. This outcome would be the second derailment in my academic life. However, I accepted that in the meantime my focus would be on surviving this Lupus thing. My mother had been advised by the doctors that I only had 5 years to live and she treated me as somebody whose days were numbered.

Post matric, I was sitting idly at home and so I decided to do something positive with my life, whilst awaiting death. I decided to enter Beauty Competitions as a source of income. My success in these competitions earned me some sort of reputation. Remember the cattle-call title of “Slender and Tall” from the township? Well, I won quite a few of those local beauty competitions, until I won the big one Miss Durban (black version) in 1989. I was supposed to go and represent my region/province in the finals in Johannesburg a month later when Lupus struck again. By the time I got to Johannesburg to compete in the national finals for Miss Black South Africa, I had skin lesions all over my arms and legs.

The face of SLE

In my family we used to call Lupus a cruel disease, because its skin lesions chose to appear on the parts of the body that could not be hidden by wearing a swim suit, which was the exposed part that was always judged during these beauty competitions. During the week leading to the Miss Black SA competition, I hid the skin lesions with long sleeve tops and pants, as opposed to my contemporaries, who wore the tinniest of clothing items to show off their natural skin beauty. I remember that week as one of the worst in my life.  I wanted it to be over, although I would have to forfeit my prize money of R1000.00, an equivalent of one million rand to an unemployed young person those days.

On the evening of the finals I was plastered with cover cream my entire body. It was not helped by the fact that our swimsuits that year were white. I remember thinking  ‘don’t sit down, don’t sit down’ the whole duration of the competition; otherwise I would leave smudges of make up on the seat and on my bum. When the competition was over, I couldn’t wait to get home and hide myself. In spite of those feelings I soldiered on, because I hated self-pity and I didn’t want to waste  my time on it, just in case I really was going to die that year.

Butterfly Rash in SLE

Those Lupus skin lesions would stay with me for the next 4 years. That however didn’t stop me from living my life to the fullest. I auditioned for a play which was commissioned to open in London at the Old Vic Theatre next to Waterfall station. This opportunity allowed me a stint in London for the next six years, where I was placed with an old lady who was an author. She encouraged me to study journalism. When I got back home, I had made a decision to further my studies. Through my matric results I managed to secure admission to a Technikon in Durban, where I was part of the first group to be admitted for a journalism class with the likes of The Daily Maverick’s Ranjeni Munsamy and Power FM’s Iman Rappeti.

During this time HIV had broken out in the United States and stories were being whispered in the township that I could possibly have the HI virus. This was late 1989 and no one knew much about HIV in this country. The only information that people knew was that I had spent a stint overseas and now I had these skin lesions on my body and the butterfly rash on my face, which they associated with being HIV positive.  That did not deter me from proceeding with my life plans. I managed to fall pregnant and delivered my first child during my first year of Journalism studies in 1991, seeing that I was not dying as predicted. I had to be a mother and push all the boundaries.

SLE Mom? Yes indeed 🙂

According to the doctors at King Edward V111 Hospital, I was to be the first Lupus experiment to carry a child. It turned out they didn’t really know much about how Lupus behaved and that we were all learning together. I survived the pregnancy and gave birth naturally, partly because of my age and the fact that I was reasonably healthy. It would be another four years before the Lupus relapsed. I then developed a complication of Lupus nephritis in 1994. I was admitted for a month in hospital and the doctors were convinced that I was on my deathbed as predicted.

Prof Malegapuru Makgoba

I also suffered other complications like had “water” in my lungs (Pleural Effusion) and had to be drained every day.  My kidneys eventually collapsed and I had to be dialyzed immediately. This would be the worst Lupus attack that I had experienced thus far. They also started me on some anti-inflammatory therapy called Cyclophosphamide. After a month on dialysis, my kidneys started to work again.  With the recovery of my kidney function, I had started to believe that I was not dying anymore. I was surrounded by the best doctors in the hospital. I was seen by a medical team of no less than 5 doctors at King Edward Hospital, including Professor William Malegapuru Makgoba.  This was before he won that crazy hard cross word puzzle and got his appointments as UKZN University Chancellor and Health Ombudsman.

I was discharged and went back to work. I would have a few relapses coupled with sessions of cyclophosphamide until I fell pregnant again. This time it was a planned pregnancy, as I had to wait until a year after the last treatment of cyclophosphamide before conceiving. This time I was married and living in Johannesburg. The second pregnancy was a very  difficult one. I was older at 35 years of age and the Lupus had worsened, with more complications on my kidneys. In spite of all the pointers to a high risk pregnancy, I successfully gave birth to a bouncing baby boy. From a spiritual point of view, I had started to think that there was divine intervention in my life. At this point I was going into my 40’s, I had 2 wonderful kids and was married to my soul mate, who was walking this journey with me. I thought nothing could go wrong.

But the worst did go wrong.  My mother, my rock, the woman who had taken public taxis after knocking off from work, rushing home to prepare a meal for me because I hated hospital food, so that she can make the 19:00 visiting hours at King Edward V111 Hospital, passed on. It came as a shock, as she had gone for a planned hip replacement surgery. It was 2 weeks before my 40th birthday. My mother and I were surprised that I had made it way beyond the initial 5 years that were predicted by the doctors, as such we had planned and we had planned to celebrate my 40th birthday together.

At my lowest low

My mother’s passing was the first trigger of many life incidents that had a very negative impact on my emotional well being.  In dealing with our mother’s death, my remaining 3 brothers were worse off than me. One of my twin brothers passed soon after my mother; 3 months to be exact. His twin followed him 6 months later. My youngest brother would die a year later. Therefore, between May 2007 and December 2009, I lost my entire nuclear family and by then my renal functioning was also deteriorating. I was clinically depressed, but I had to soldier on as I had my immediate marital family (husband and kids) that still relied on me and they were anxious that I really might not pull through at that point.

The worst was yet to come. In 2011, it was confirmed that I had little renal function left and I started the process of preparing for renal dialysis, such as having a fistula put in my arm. My husband had to look for work in Johannesburg to be closer to our family. We had been living in Cape Town for 10 years and loved living there. Now we had to start in a new, although familiar environment. It was new in terms of medical care, especially access to nephrologists to take care of my Lupus Renal disease.

CONCLUSION

Throughout my life I have met the greatest medical minds, who have treated me with compassion and kindness. I will never forget Professor Charles Swanepoel and those King Edward V111 Hospital doctors. That specialist saved my life.  Down the line things have changed; now I deal with mostly technicians and machines, with minimal interaction with my treating nephrologists. There is a glimpse of light from the nurses at my dialysis unit. But I have been hospitalised 10 times more in the last 4 years and have been operated on more times than I had all my life, (1985-2012). Since 2012 I have physically felt my life slip away. I now think more about death than all the years that I had been living with scary Lupus. The worst thing now is that Lupus is on remission since I started dialysis.  How many more years do I still have to live? Well, only God knows.

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