Sunday, February 11, 2007
. . .
I try to maintain a really positive tone on this blog, and emphasize all of the things that are going well, but the truth of the matter is that a lot of things aren't going well, and this whole thing is difficult and tedious and terrifying.
We have no idea how much of a recovery Robb is going to make, or for how long he is likely to see improvement. We have no idea if he will be able to regain enough functionality to return to work.
I think the blog is particularly misleading in this regard. We show all of the fun days, when everything is working out well. But we skim over the ratio of Good Hours to Bad Hours and the fact that any good day usually has to be paid for with a day of unpleasant physical discomfort.
I also don't tend to write about all the things that we used to do, that we just can't anymore. We can't have a normal social life, because we never know which days are going to be Good Days. We can't plan for the future. We can't travel. We can't keep our house clean. My creative energies are totally scattered. Life is pretty much of a mess.