Yesterday, I said this would be a free-write day, which is probably good. There’s a lot that’s been running through this scarred brain of mine.
First thing this morning was my really lousy German. The word I was searching for was schadenfreude, but I was thinking about the Dutch-speaking infusion nurse trying to figure out what defenestration meant. (One of the standard things before my infusions is questions about changes in medication or treatment. I said my wife was considering defenestration, but that hadn’t happened yet. She paused, then looked at my quizzically. German and Dutch are somewhat close, so she got the window part, but….). But schadenfreude. Why was I thinking about that? An acquaintance was lamenting that something that’d been produced in not the way he/she would have prescribed isn’t horrible.
Yes, that happens. Fucking deal with it. You don’t have all the answers, and sometimes something you were hesitant about turns out good. The commentary on that admission was equally telling. But when politics is your true religion, admiration of anything an apostate does is unacceptable.
So many things in my life I’ve had to accept that my initial take wasn’t the one that would work. I’m okay with that. Maybe it’s not what I would have thought, but, if it works, so be it. I’ve written about Tom Landry here, before. Part of where he messed up with the Cowboys was trying to do all the things. Stick to the defense, coach, that’s your forte. Roger Staubach would have told you that.
I’ve now forgotten the other thing I wanted to write about. It’s not reiteration of my thing from my twenty months in hell – if your solution to securing a Windows host involves “install Perl,” you’re doing it wrong. (Naturally, the genius to whom I was answering at the time said it was absolutely correct. After all, he’d been “doing this a long time.”)
For tomorrow, I’m going to see if I can update Day 19 from National Journal Writers’ Month back in 2010 (the first year I did it). I will have to see what’s changed. Saturday, of course, is a summation; why I do this, and did I get anything out of it?
Day 19 – On Being Sick – 11/19/2010
“Or, if you are someone with an illness, what is your biggest pet peeve about how others treat you, and what is the best thing anyone has ever done to you or for you since they found out about your illness?”
You know, nothing. What can I say? I mean, the biggest thing, probably, is that people kind of think the worst about the progression – that I’m going to be a complete cripple within five years.
I’ve likely had this disease since I was in my early teens; my neurologist is pretty convinced that my progression is very slow, and that some of my lesions are very, very old.
They also don’t realize that there’s lots of people in the public eye who live and work while dealing with the disease….who’ve also had the disease for a long time, but appear fine.
Best thing someone has done for me? I don’t have a clue when it comes to strangers or acquaintances. My wife (then fiancee) gets more credit than I could ever express for her love, support, and care.
Now seven months after the diagnosis, both of us are moving along. It’s tough, and I probably ask more of her than I ought to…..
Only so many spoons sometimes.