posts interesting only to me

As anybody who has been following Wis[s]e Words this year you know S. and I have been struggling with the recovery from “our” kidney transplant. Myself I’ve fortunately only had about a week of physical recovery time from the operation, plus another month or so of struggling with a opportunistic wound infection. S. on the other hand had been living with a lowered kidney function for years and while the transplant has made that more or less normal, the side effects have so far prevented her from enjoying a “normal” life.

One benign side effect of the transplant is that S.’s medicial problems have come out in the open, in so far that people understand why she so often was incapable of joining family functions and such. Any sufferer of a chronical illness or disability, especially the less visible ones, knows it can be difficult to explain why you can’t do normal, everyday things. Fantasy author Jay Lake (buy his books) knows the problem, due to his bout with cancer. To explain what it feels like, he talks about spoons:

Basically, the idea is when you’re sick that way (or in my case, in post-op recovery followed by chemo), you can still do anything you want. You just can’t do everything you want. People in full health start their day with a very large supply of spoons, the spoons representing increments of energy or attention or focus, and spend them as they go through their days. People in limited health have fewer spoons. Simple things like taking a shower can take a lot out of a person, for example. So you wind up asking yourself questions like, “do I have enough energy to take a shower and to do a load of laundry?” Because you have enough spoons to do either but not both.

The spoon theory was thought up by Christine Miserandino of butyoudontlooksick.com. Here she explains how she first used spoons to let a friend understand what it felt like to live with Lupus:

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

The spoon theory is not meant to make people feel sorry for people like Christine, Jay or S., but to show a little bit of what they have to deal with. People are not defined by their illness or disability, but the spoons theory shows that they have to take into account their limitations.