A piece of my soul

Over the past few months, since roughly October last year, I’ve had to watch my sister get progressively sicker and for the first time I’m wavering in staying strong. Seeing her almost breaks me every time. I’ll be honest, it takes a lot to keep a straight face, a smile and reassure everyone that everything will be ok.

Some background is in order I guess. Last year she started getting regular sinus infections that just wouldn’t clear up, regardless of what medicines the regular doctors visits wound up being prescribed. Then she developed a kidney infection. And one Wednesday evening (if I remember correctly) she woke up with her arms and legs covered in spots and feeling incredibly weak.

She went into hospital from where she was moved to Tygerberg hospital very soon after. It was there that we found out it wasn’t actually a sinus and kidney infection, but rather a form of vasculitis caused by a very rare auto-immune disease called Wegeners Granulomatosis. We watched her get progressively worse over the course of a month as they battled to get the immune system to stop attacking her body. I won’t go into too many details but it was a very harrowing month.

As always I turned to details and knowledge: the more I know, the better I can deal with something, and so I read up everything i could. Eventually, in December she recovered to the point of being discharged. She had some (very little) kidney function and was on a strict low sodium diet but she could at least come home to us. I can’t put into words how happy we were to spend Christmas with her in our midst.

I don’t think any of us, and that includes herself, realised how tentative and fragile her body was. She stayed with us for a few days in January and I was shocked at how feeble she was, how little she ate and how quiet she had now became. Before the week was out she was back in hospital, where she still was.

Between diarrhea, septicemia and a range of other infections, we were lucky to have gotten her there in time. Where she still is, still fighting off these infections.

She’s still in ICU, so very weak and it breaks my heart. This is my sister and the thought of losing her pierces my thoughts almost constantly. Seeing pictures of her as a carefree one year old, thinking that she might not see her first nephew or just while I’m driving.

There’s a piece of my soul lying on that bed with her and I didn’t think I’d have to possibly part with it just yet.

Advertisement