Note: as always, names and details have been changed to protect the identity of the individuals involved.
I apologise in advance. This is an angry blog born out of frustration.
Some time ago, I was involved with raising funds for children with life threatening kidney diseases. It was a horrible and humbling and wonderful experience. The thing about kidney disease is that it steals your health (like all diseases), but it also takes your time. These kids would spend hours and hours each week on dialysis and so, by default, it would affect everything: their parents’ careers, their schooling, their friends. You can imagine. When a kid gets a kidney transplant, it is life-changing for everyone. During the time I was involved, there were a few kidney transplants. Each one was celebrated and monumental, but there was one story that will stay with me forever. Mpho was eight, and did not just need a kidney transplant, but also a liver transplant. It was the first surgery of its kind in SA for a child his age, and with the state, a private hospital and our fund raising (and of course finding the right donor) we pulled it off. Mpho survived the surgery. There were no issues with the organs, and for all intents and purposes, he was going to live a normal life. It was everything we could have hoped for.
I wish this is where the story ended, but tragically, it doesn’t. Mpho was such a character. He was flamboyant and often had us in stitches. His humour was brilliant, and boy could that kid rock an outfit. From the time I met him, there was no doubt in my mind that Mpho would not be conventional. He would not be marrying a gal, own a home and have a white picket fence. Mpho’s grandmother decided that his glamourous nature was due to his new organs. She was convinced that the liver and the kidney were making her grandson homosexual. I kid you not. So, his grandmother decided, in her wisdom, to stop giving Mpho his anti-rejection medication (which people who had organ transplants have to stay on for the rest of their lives). Mpho started getting ill. His parents assumed his gran was taking him for check-ups, but she didn’t. By the time someone intervened, Mpho was beyond help. He died. Millions were spent on saving his life, only for one woman’s misguided faith, bigotry and ignorance to end his beautiful young life.
I wish this was my only story, but I have too many. Faith can be a beautiful thing, but often it is destructive. Thabang arrived with us for end-of-life care. He is in his early 40’s and all the doctors have told him there is no hope. He is a CA and used to things making sense and adding up. His life ending like this clearly doesn’t add up. At home, his pain was out of control. If his medicine was strong enough to manage his pain, it left him completely comatose, and they could not get the balance right for him to be both pain-free and lucid. Eventually he got to us, and the one thing our people can do is good maths. Pain control is just maths, and within a day, Thabang was pain free, feeling much less confused and had some energy, but he was still dying. He did not however accept this fact, and neither did his family. Based on this new feeling of vitality, Thabang’s church friends all decided that this meant that there was hope and eagerly quoted that “if you have faith like a mustard seed you can move mountains.” That mustard-seed faith sent him straight back to do some more radiation, making him sicker and drawing out his suffering. Remember this: radio-oncologists will treat you if you ask. They have nothing to lose. But Thabang lost, and so did his loved ones.
In case you’ve not had enough of my sad stories, I will tell you one more and promise that next week’s blog will be light-hearted and full of miraculous recoveries.
Last month, Suzanne arrived to stay with us for “recovery”. I am not a doctor, but reading her reports it was clear that this 50-year-old woman was not going to make it. Quick background story: she’s from America and is currently living in Botswana. She’s a Jehovah’s witness and had two healthy pregnancies, but something went wrong before menopause and the doctors recommended a hysterectomy. The family came to Johannesburg for the surgery and thought they’d do a bit of shopping, see some movies, and maybe visit Gold Reef City. Hysterectomies are common procedures, but with all surgeries things can go wrong, and something did. This little glitch could easily have been resolved with a blood transfusion, but as a Jehovah’s witness, she could not receive this treatment. This resulted in her getting incredibly ill. She got sepsis, her bladder was removed and she ended up with pipes and bags all over her abdomen. For five months, she lay in ICU and eventually the doctors made the call to send her home to the States. This is where we came in. We had to get her strong enough to travel. After reading her reports, I chatted to Dr Jodi and Dr Jes, and we all agreed she needs to receive palliative care. There was no way this was recovery, and so we took her on. We adored Suzanne. She is gentle and soft spoken. Her husband and two young children stayed with us too. This was one of the most wonderful families I’ve ever met. They were filled with kindness to each other and so much gratitude toward us. We needed to just get her strong enough so she could go back to Ohio to spend her last days with her family. Suzanne’s wounds were our biggest challenge, and our wonderful wound care specialist used negative pressure care ( commonly referred to as vac dressings). This is all that would work, but we literally saw, from one day to the next, how Suzanne’s very essence was being sucked out of her. After a month with us she was losing much more fluid than she could ever take in and her kidneys started failing. Against everyone’s advice, her husband made the call to have her readmitted, and start dialysis. It is okay to let your blood out of your body and go through machines, but you just can’t get someone else’s blood. Makes sense hey?
All these stories of unnecessary suffering make me question the role of faith. We have seen it abused and manipulated and even weaponized. In the case of Suzanne, her faith denied her basic medical care. I believe her faith was criminal and deadly.
But here’s the thing: we’ve also seen faith that heals. I’ve seen how faith gently holds a loved one’s hand by a bedside. I’ve been lucky to witness people praying and believing without demands, but with humility. I’ve seen belief that did not insist on a miracle, but knew that the miracle was already there because love was present. May I suggest we choose compassion over certainty and hope instead of insisting there is one absolute truth? Let’s allow science to do what it can and let faith fill in the gaps we cannot understand.
I still believe in the goodness of people. And I believe we can do better – when love leads, not fear.