By now, many of you are wondering if I’ve taken a serious turn for the worst. Or is it worse? I’m never sure about that, and I don’t feel like looking it up. It’s true that my body continues to weaken, and it’s getting harder to breathe. My speaking voice is really quiet, which means that Otto just laughs at me when I tell him not to do things (he openly mocked me by eating my peanut butter sandwich off the counter last week while I looked on, and later he acted all innocent like he just hadn’t heard me telling him no. I hope he gets diarrhea.)
My intention was to blog twice a week when I started in 2014. Now my intention is to blog today, and we’ll just see what happens after that. Summer was good, although as usual it went by so quickly that I feel like I went to sleep in June and woke up in September. Scarlett got prescription glasses and went to her first sleep away camp for one week. The glasses are already broken. I mean, did I really even need to say that? We didn’t even send them to camp with her, because it’s not like we’re amateurs here. But we did think she should wear them to school, and clearly that is where we went wrong.
Sleep away camp was a great success, and when we picked her up she informed us that she would be going for an entire month next year, and then she pointed out a couple of the kids she met, including one whom she identified as Jerky McJerky, which definitively means she had a crush on him. Scarlett has been described by certain members of my family as “boy crazy” and I have to admit that she gets this from me. Rob usually manages to act like a normal person around cute boys.
I keep wanting to quote song lyrics. Words written by Prince, The Cranberries, and Aimee Mann float through my head all day long, but when I try to assign some meaning to them it always eludes me. But the one I keep coming back to is Time by Tom Waits. About 75% of the words in that song are “time”, but maybe that’s the whole point.
My doctor tells me to stop thinking about time. I know what he means, but I always feel the same when a new school year begins. A sense of hope, a rush of disbelief that I made it through another summer. And running parallel, the knowledge that none of this means I am protected from what’s to come. I imagine that at the end of even the oldest person’s life, part of them must think that it went so quickly. As if their very existence had once been infinite, and suddenly it all seems like it must have been a dream.
The reason my doctor is telling me not to think about time is that, despite the fact that I refuse to go to clinic, I like to FaceTime him and ask him how much longer I’m going to live. This sounds morbid, but in fact is quite enjoyable, because he doesn’t like face timing, and because he’s always pretty reassuring. In our most recent call, he was in the back of an Uber giving me a play-by-play of what was happening on San Francisco’s Embarcadero. The upshot of our conversation was that I am no longer the prototypical ALS patient. My disease is progressing, but I’m still alive. Also, someone was getting arrested outside of the Ferry Building.
If I’m not supposed to think about time, does that mean I’m still responsible for dinner?