Imagine That

Here's a thought experiment: try to imagine what your life will be like in five or ten years. The actual number doesn't matter. Just pick one and try to paint the picture. Where will you live? Who will you live with? What will you do? For work? For fun? Be as detailed as you can.

Got it? Ok, now here's the thing: I can pretty much guarantee you're wrong; fundamentally, substantially wrong. 

Think about that picture again, but this time focus on the person in the middle of it. You, right? But I'll be you anything it's the you as you are today. But who you are today is not who you're going to be in five or ten or whatever number of years. Life will happen, time will pass, and you will be different. You'll be smarter (or less smart), your memory will be better (or worse), you'll be faster (or slower), stronger (or weaker), happier (or sadder), etc., etc., etc. Maybe better, maybe worse, likely a bit of both -- but definitely different. 

Obvious right? But as obvious as it is, as we look to the future it's hard to acknowledge and nearly impossible to account for. How will you be different? Who the hell knows? It all depends on what life brings you. So we just ignore the question, project our current selves forward in time, make our plans accordingly and then deal with the gaps as best we can as they arise.

The problem with a terminal disease is that it makes this problem vastly worse. The rate of change increases astronomically at a time when your expectation is that it's going to be at its lowest. 

I realized this on my trip to New Zealand, as I began to recognize that the differences between what I was experiencing and what I had expected to experience at the time the plans were made was huge. To throw another metaphor into the pot, imagine planning to run a marathon, training and preparing and getting geared up. You're feeling great and ready to go. Then, when you get tot he starting line, someone straps a twenty pound weight to each of your ankles. Needless to say, you won't be running the race you expected. 

That's sort of what things are like for me these days. And it makes it really hard to know what the right thing to do is. How do you prepare for a race if you don't know how much weight will be strapped to your legs -- or if you're going to wind up strapped to a chair?

And we haven't even begun to account for the effects of hope. There's another big problem...