I wanted the title to be something more…dramatic/appropriate/somber, but Jack asked if that could be the title of my autobiography and I said no, but it COULD be the title of this post. So. This is a glamorous post, sure to make you fall madly in love with me.
Wednesday my body totally betrayed me. I mean, with ALS it does that as a matter of course, at all times. There have been FAR more instances of yelling at my legs to Do The Thing (including one total failure and forced sit-down while trying to get in to a car lately), and opening string cheese is becoming less of a struggle and more of a “forget it, I’ll get sscissors”. And now that I’m posting this, I’m realizing how awkward my typing is now. But Wednesday there was an Incident.
It started with a fall. I was cleaning up puppy pads because my elderly cat can’t stop peeing everywhere, and my little brother was coming over to steam clean my carpet for me. Balancing while operating a machine is no longer possible. So while scooping up the wet pads, my knees buckled and I just sat down. Wrenched my ankle a bit, still hurts. I was upset, but not crushed or anything, it happens. Justin the Wonder Brother came over, steam cleaned the office carpets and most of the dining room, and then ran the Spot Bot when Parmesan sauntered in and peed on the still-damp clean carpet.
The rest of the night proceeded without incident until I was ready for bed. I went to the kitchen to rinse out my cup and get more juice (see, Dietician? I’m drinking juice instead of soda with my evening pills like I promised!) and as I’m standing there with the water running, I just..start peeing. And I can’t stop.
Now, with ALS I was told soooometimes there is some ‘bladder urgency’ because of muscle spasms. And I’ve definitely experienced that – just all of a sudden YOU GOTS TA GO. And there’s been a couple of times I almost didn’t make it. But this was the first time I just completely lost control. I couldn’t do anything about it but stand there, fervently wishing it would stop, just hold it, just wait, the bathroom is LITERALLY ten steps away, but there was nothing. Just grab the roll of paper towels and wait it out.
And when it was over, I cleaned up the mess, took a shower, and bawled like a broken thing. Because one of the silver linings in all of this was the solace I took in the fact that people with ALS generally maintain bowel and bladder control. If I have to be trapped in a meat shell, at least I don’t have to be a meat shell sitting in a wet diaper. But then this, and I don’t know what to think, and I hope it’s an isolated incident, but it was jarring and scary and I spent alllllllllllllll day yesterday in a terrific funk that I’ve still not entirely shaken.
And then yesterday my nephew fell asleep and peed on my couch so I guess my house is just kinda a pee zone. Hooray for that.
Sorry I’ve not got something more lighthearted for you today. Sometimes with ALS that’s how it is. But I’m still mobile, still alive, still working. Still mostly happy. Still loving all of you.