Demoted


It’s time to add another entry into the reverse baby book. Baby’s lasts. Baby’s last step, baby’s last time cutting her own food, baby’s last time tying her own shoes, etc.


Baby’s last time getting off the toilet by herself.

That’s a new thing that I just don’t get to do anymore apparently. I’ve been struggling with it lately, my wheelchair seat is 2 inches taller than the toilet seat, so it’s always been a bit of a haul to get up back into my chair when I’m done. Transferring to the toilet is getting difficult, but it is much easier than transferring off. As long as I am transferring from a high surface to a lower one, I can do it. But the last three times, I haven’t been able to get off of the toilet very easily at all. And last night I had to call J in to help me.  After giving me some Ativan because I had a panic attack about the whole thing.


It’s weird how I come up with these little physical tips and tricks to get my body to do the thing, workarounds that I create to make up for the loss in strength, that I cannot for the life of me remember how exactly they function when my strength starts to go beyond that point. Now, was it that I put my foot here and lean forward? Or was it more like the other foot was in the back? And did I grab the bars or did I push off the seat? How the hell did I do this simple thing before? And why isn’t it working right now, what’s different? It’s a bit like asking the caterpillar how it walks, once you stop to think about it, you can’t do it again.


He was able to grab me under the arms and swivel me onto my seat. Surprisingly easy. So that might become our game plan for a little while. The other option is to start using the hoyer to get in and out of there, but that’s just a logistical nightmare. I’m glad I’m still able to stand for a moment so that we can get thunder pants around my ankles and up, I’m not sure what we’re going to be able to do about that when I can’t stand anymore. We’ll figure it out. It’ll be demeaning and horrible, but we’ll figure it out. 
I feel like it’s a demotion. I have lost an ability I had before through no fault of my own and I get to live with a consequences of that. I wasn’t quite ready to give up using the bathroom on my own. I knew it was coming, but I’m still not ready for it. It is easily one of the worst parts of ALS, how humiliating it is while it’s killing you. I still maintain that Alzheimer’s is the worst disease to have, and I’d very much rather have this than that, but it’s a pretty close race.


There will be many other entries into the baby book of Doom, this is just the most recent. But it’s one I’ve been dreading for a while. I don’t mind being helpless as much as I mind being gross. It’s unpleasant for literally everyone involved. In a very special demeaning way. I should have asked if I could have them reroute my intestines to a bag while they were doing my feeding tube. Then I wouldn’t have to use the toilet at all anymore. It would bring a whole other set of problems I’m sure, but God damn it.


I have a much happier post to write! But I needed to get this one out of my brain while it was so fresh and the timing was here. I’m sorry to bum you out. I’m doing okay really, these things are going to happen. Incrementally, with prejudice, for the rest of whatever’s left of my life. It’s just how it is. It doesn’t make it any easier, but I should know to expect things like this by now.


Enjoy pooping in private my friends, it’s a privilege.

2 thoughts on “Demoted

  1. I can understand the humiliation, even as I tell you that in my mother’s last few months, I bathed her and helped her toilet. Didn’t bother me at all. Think of this being your sibling. You’d just do it and get on with your day.
    I do hope you quickly come to a place of peace with it and are able to focus on things that bring you joy.

  2. Oh, honey. I’m so sorry. I hate it for you. And I’d be there helping you if I were closer – I so much wish I was, and I WILL absolutely tell you that the people I love that I helped in that way? It never bothered me for an instant, but I wish I had the empathy to have been able to understand that it sucked for them in a way I didn’t see or feel then.
    There are belts that help with transferring, if no one has advised you of that. I’ll amazon you one if you’ve not got one. I love you. My next poop will be done in your name, and I’ll lock the door in case the children come knocking.

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