The State of the Cake Address


So, you might have noticed that it’s been fairly quiet over at Cake Towers™ for the last four weeks and this radio silence has caused me to think about running any kind of project when you’re quadriplegic. You see, since mid-January I’ve had a bad pressure ulcer on my ischial tuberosity.1

A pressure ulcer happens when blood is cut off from an area of the body. The area dies and the dead flesh craters in your leg. The crater can be a few layers of skin deep or open up all the way to the bone. Obviously bone deep is the worst, but if you also get an infection and the infection gets into the bone it really can be Good Night Vienna. Eeeeeek, indeed!

This happens to quads because we can’t shift our weight around like able-bodied people, so we sit in one place too long. I have an incredibly regimented turning schedule - a chart that tells me when I have to sit up/turn over/get down 24 hours a day. But even with these regimented schedules, pressure ulcers are generally something that every quadriplegic will get at some point in their life no matter how good their turning schedule is. In fact I think mine is a shearing force pressure sore, from turning. It is - and please forgive the pun - a real pain in the bottom!

This brings me on to running any kind of project when you’re quadriplegic. Because I’ve got an active ulcer, my turning schedule is much stricter than usual and my painkillers are much higher so I am dopey and make more mistakes. I can’t get to my computer as much as I need to, I can’t reply to emails, work on new posts for the blog, get involved with new projects, keep up with the projects I’m already involved with, and a whole host of other things that I would rather be doing than lying in bed in pain.2

So right now I can’t work in the same way I do when I don’t have a pressure sore. But it doesn’t mean I can’t do anything! I don’t have the option of “trying harder” or “overcoming” this reality. I have to work with this reality. It’s a good opportunity to find strategies to keep the Cake ticking over while I am indisposed, because let’s face it: I’m going to be indisposed from time to time, and probably more so than now.

My partner says that everyone accepts some physical limitations - that nobody went out of business because they had to sleep - that’s a limitation everybody accepts. And it’s true. Nobody is expected to fly, or have X-Ray vision. Instead we have devised strategies (like shift work) and invented machines (like planes!) to deal with those limitations. So that’s what I’ve been working on and thinking about lately: dealing with unavoidable restrictions and getting things done anyway.

We also automated all our lightbulbs with IFTTT and I will update you on that forthwith!

The pressure ulcer seems to be improving, my time in front of the computer can be increased a little bit more now and world domination can continue in the not too distant future!

  1. That’s the Bum Bone to you and me! 

  2. Like arguing on Hacker News, natch! 

Stuart, medical, disability, and reflexive

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