a little context

The Superman thing. Some may be a little put off by it without context so I need to delve into this.

I did not give myself the nickname of Superman. Nor am I a big fan of comics and superheroes. I will admit that the idea of Superman is enticing. The notion of being indestructible, albeit having one major weakness, while walking among mere mortals fascinates me. And Clark Kent’s bumbling humility is charming. But truth is that others, throughout my adult life have called me this. But it is not a compliment, in some cases it has even been a jab. Chief among the jab-throwers was my wife. But she was not the first.

When I worked extra hours with little sleep at my job I was called it. When I was the first one up after a night of heavy drinking with friends I was called it. When I rolled off of a waitress for the fourth night in a row after meeting her at 1AM, plowed her crops for 2 hours and then got up with her at 7, yup guess what she called me. Well, to be clear she asked me if I was. But it wasn’t until I got sick that the name stuck. And it wasn’t a compliment ever again. It became the moniker of a guy who had a disease that he outwardly seemed to ignore, deny and try to overcome mentally. I was accused of being too optimistic, not aware of my limitations, not listening to my doctors, and being a stubborn ass. As my wife so eloquently put it “keep it up but pretending it isn’t there won’t make it go away.” And she caustically joked, again, that I seem to think I’m Superman. The jokes on you I thought to myself, my real superpower is not listening to other people.I turn inward for strength and I handle things my way.

To further the metaphor, if I am superman then IGA Nephropathy is my Kryptonite. It is an insidious, persistent and incurable kidney disease that attacks the kidneys and results in dialysis or transplant for all involved. It goes in phases. A patient may go for months and even years without any serious decrease in function and then suffer a loss of 10% or more quite suddenly. A good thing, if there is such a thing, about IGA is that it takes its time. So even though I was diagnosed in 1987 it wasn’t until 2008 that it got to the point where I was told that I needed a transplant or my future had a dialysis machine in it. I received a live-donor transplant from a co-worker in 2011. She saved my life. It is a debt I can never repay.

Fast forward to today my Kryoptonite, the IGA has come back. I am again in need of a transplant or a medical advance soon, and  The doctor’s knew this could happen but chose not to tell me. This blog is a painfully autobiographical account of the multitude of events between 1987 and today that were influenced or caused by chronic illness.

more later…