Getting better, but not all the way

Our stories about illness often do not reflect the reality.  Too often when we talk about disease we try to put it into convenient buckets - sick, healthy, cured, infected.  The reality of illness is that a huge proportion of health struggles wax and wane over time becoming more or less of a struggle but never completely vanishing.  Even when we are discharged from the care of doctors and people talk as though we are cured we often have to deal with the illness for a great time to come.

Pinkie Pie is a great example of this.  When she was young she had serious kidney problems that led to a four day hospital stay many years ago.  We spent years being careful about diet, water intake, bathroom usage, and other things and still ended up in the hospital or doctor's office many times.  That hasn't been an acute struggle for five years or so now, and in the minds of many people I imagine Pinkie Pie is cured.

She isn't cured.  She never will be. 

Although she isn't cured she is in much better shape.  A short while ago the hospital finally cleared us to stop visiting them and to continue on our lifelong program of managing her illness.  These days that is fairly easy and we rarely think much about it, but I still need to keep on reminding her to do the things that they have told us to do.

It is weird to think about sometimes.  I feel like there should be some giant emotional release of tension to finally get the news that we aren't going to be visiting Sick Kids Hospital anymore.  That release didn't happen though.  She was steadily getting better over years and years and it was clear that this sort of thing was coming.  When they finally told us to go away forever it felt like just another step along a long journey.

I am trained by media to expect a huge reveal "You are cured!" and a subsequent shift in paradigm.  Instead all I have is just a vague sense of relief that we don't have to commute downtown for appointments anymore.

I think this is a more realistic model of illness and recovery than what books, movies, and shows train us to expect.  Disease is rarely one and done, usually leaving a long, difficult trail.

Thankfully after many years and much struggle we are on the easy part of that trail.  We can't entirely relax because the trail could get rough once again, but for now the path is smooth and straight.