Literary Discussions

You are kind to express such a sentiment. The curious thing for me, as I watch the progression of her incurable illnesses is that most people, quite naturally and through no fault of their own, have no conception of what chronic and incurable illness is. Naturally, most people think, "Oh, you are sick, so may you quickly recover."  For many illnesses there IS no recovery. Being "well" means getting yet another year of "quality life" which is lousy quality compared to normal health, but you can walk around, eat, see, use the bathroom. 

She has literally 15 doctor/specialists and she sees one or two each week. She literally takes 20 or 30 pills per day and is constantly setting a timer alarm to go off at different times for different procedures. She is meticulous by nature. Many people would not have the mind-set to be so strictly compliant. In fact, non-compliance is the biggest problem with the chronically ill.

Sometimes, when people ask me how she is I say "Imagine a tight rope walker on a rope stretched across the Grand Canyon with no net on a windy day. She is fine from moment to moment in the sense that she has not fallen, but she is in danger of falling at any minute; a fall from which there can be no recovery."  

Some people assume that an organ transplant makes you "all better."  Her kidney transplant works at only 20% which is borderline but sufficient to keep her off of dialysis. I have seen many heart/liver/lung transplants. A kidney may last an average of 10 years. Lung transplants may last only 2 years, but that is 2 years of better life than you might have on a respirator.  

I take the time to try and express these things so that some people will perhaps be better able to grasp the situation of chronic incurable illness should it strike someone in their life. One can only really understand such a life if you view it from the inside. Once you have that view then suddenly, alcohol, tobacco, carbs, unsafe behavior, take on a whole new meaning and a meaning which cannot be conveyed by words or literature but only by the pain of staying alive from day to day.