The Sitch

Hello, my name is Vashti, and welcome to this old body. Bob Villa couldn’t make it today.

I figured it’s time for a check-in. Even local friends don’t know exactly how far my symptoms have progressed, what I can and can’t do, so let me show you around. We’ll do this from the bottom up.

Feet – useless. I can’t move them all. I still have full and complete sensation in them, they just don’t move when I asked them to.

Legs – some movements, no walking. I can shift my legs around a little bit, raise my knees just a little bit, and that’s it. Boom. I made you a poem. My knees have become stiff with lack of use, so it was getting to be excruciating what I had to bend my legs to be in the sling or whatever. I now sit with a blanket curled up behind my knees to prevent this.

Bathing suit area – OMG potty talk ahead LOL LOL LOL – I pee exclusively through a suprapubic catheter. It is a surgical tube installed straight into my bladder about halfway between my groin and enable. It is a single best surgical decision I have ever made. I get UTIs a lot, which sucks very much considering one of them wound me up in the hospital earlier this year. Pooping is hard, because the muscles I used to bear down are starting to wither away. So it’s a weird kind of constipation. I’m not sure what we’re going to do about that when it gets worse, laxatives are not really an option because I’m not going to be able to make it to the toilet quickly when they kick in. So that’s fun.

Guts – I have a feeding tube installed, but we haven’t started using it yet. We flush it daily with water to keep it open and clear. I can still eat food so it remains installed but auxiliary.

Arms – mostly useless. I cannot raise my hands to my face. I need things to be in both hands if I am to use them, if something is out of immediate reach, it is off in space for all it matters to me. I have had to surrender control of the bed for this reason. I need someone else to raise and lower the head. I need someone else to dress me these days, I can’t really participate in anymore. I am an unwieldy doll.

Hands – mostly useless. My range of motion is extremely limited. Mostly it’s just my thumbs can move a little bit. My cell phone is in my hands, I can swipe up and down but I can’t reach the other side of the screen. Using a cell phone is very hard these days. This entry is being brought to you by eye gaze technology and speech to text software! Hooray for technology!

Lungs – getting pretty bad. My lung capacity is now around 23%, actually probably lower than that because I haven’t had it tested in a few months. Breathing is officially getting hard. For the most part I still only use the AVAP when I’m sleeping. There are days though, there were three of them so far, which went where my breathing was so shitty that I wore it all day. This will be what kills me. There is no way in hell I am having a ventilator, so when my breathing gets too bad then that will be it. Hopefully they can make me comfortable.

Speech and swallowing – I can still do both of these things. My speech is unaffected except by my breathing, which makes my voice high and reed sometimes. I’m beginning to have problems swallowing. It might take me a gulp or two to get something down. Don’t have problems with things going down the wrong pipe very often, which is great because I can’t draw and breath strong enough to get it out when it happens. I wind up having to make these horrible horrible noises trying to draw in breath. It’s pretty damn scary for everyone involved. I’m afraid that’s how I will go out – choking on something. I’m very careful and diligent when drinking and eating so I think I’ll be okay.

Brain – the brain meats are doing their job but often with protests. I get a lot of panic attacks these days, mostly related to my breathing. I find myself a little out of breath, which triggers panic, which makes me unable to breathe, which makes me panic about not being able to breathe, and it’s just a vicious cycle. Praise God for Ativan is all I’m saying. I’m mostly coping. Things are getting more real, I’m definitely in planning stages for what will happen to all of my shit when I’m dead. I have a lot of stuff. I am trying to make my death as easy on people as possible. It’s a bureaucratic nightmare, so I’m doing what I can to alleviate that.

This concludes our tour. Please return your seats to their full upright position and make sure your table trays are locked and stowed. Moral of the story here, I guess, is that things aren’t exactly great but they could be so so much worse. I still have a sense of humor about it, and as long as I can find it funny, I’ll be okay. Thanks for coming along for the ride. Wait, I was doing a This Old House Parody. Okay well wear your safety goggles and check your measurements twice. Join us next week. We’ll be making mountains out of mole hills.