Confessions of a (chronic pain) graduate student

Students at my school have such a reputation for getting sick and still making sure the show goes on that the local Starbucks have a cure-all drink named after my school. Boiling apple juice with peppermint tea.

It’s not bad, either.

๐Ÿ™‚

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Confessions of a (chronic pain) graduate student

While filling out one of those endless medical questionnaires online the day before an appointment...

Q: “Have you experienced difficulty in making decisions in the past 7-14 days?
A. Never or almost never
B. Occasionally but does NOT severely affect me
C. Occasionally but does severely affect me
D. Frequently but does NOT severely affect me
E. Frequently but does severely affect me

Me: Hold on, I’m going to play a round of Sudoku while I try to decide how to answer this. Wait…does that mean… ? Hold on, I know where the 1 goes!! ๐Ÿ™‚

 

 

 

Spoon Theory, updated

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Quite recently, and for the first time, I got to explain the “spoon theory” to someone. It was oddly funny to me. After all, the circles I now frequent in my little online universe are filled with references to “spoonies,” spoon crafts, spoon jewelry, spoon tattoos…

Actually, it turns out the story of the spoons is a little hard to relate succinctly. It goes something like this: One day a woman with a chronic illness was eating in a diner with her friend. Her friend asked her what it was really like to live with a chronic illness, and, struggling to find someway to *really* get this right, the woman collected spoons from the other tables. She then walked her friend through a day, taking away spoons for each activity. The physical removal of a spoon helped her friend realize the real pain of the loss of “normal,” the endless and emotional calculations one who is sick has to make on a day-to-day basis, and the ever-present knowledge that you are *sick* – its own special isolating misery.

It’s a great analogy and it works especially well if there are real physical objects available. Like spoons.

I was on the phone. It was late. I was recovering from a procedure. Spoon theory is not that intuitive, I discovered. We don’t normally think spoons = energy (at least not outside the world of the chronically ill). We think soup.

Enter the battery theory, which instead compares being chronically ill to being a damaged rechargeable, well, battery. It only partially charges, and that’s all the energy you’ve got. Simple.

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Of course, that explanation itself got quickly modified to my favorite, the cell phone theory. It’s similar to the battery theory, but with many more ways to elaborate. Basically, you own a cell phone with a bad battery. It doesn’t matter how long it charges – it’s never quite full. Honestly, it’s hard to predict how much juice you’re going to have when you grab it in the morning. Maybe it’s 83%. Maybe it’s only 39%. And that’s all you have, so all of a sudden Snapchat and Words with Friends is O-U-T. Maybe you put the phone in battery-saver mode and sacrifice some functionality in favor of longevity, or maybe you burn hard for 2 hours and are left at the end of the day with a busted radiator, in the rain, and no way to easily call for a tow. Perhaps you could bring along chargers, but then you’re always hunting for that free outlet at the back of a room. Now imagine it malfunctioning, in and out of airplane mode. The phone is physically in one piece and all the apps are there, but they can’t function. Or how about the stupid thing sometimes just crashes? BOOM, black screen, and now it has to reboot. Maybe some wires are loose, so the display flickers and doesn’t adjust properly to changes in light. Possibly some of the software is glitchy, so it can’t process texts or answer a call unless you first open the calculator app. What if you picked up a virus or key logger, and some of that energy is now being eaten by a malignant thing that destroys your phone’s operating system and steals your identity?

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Hopefully you can see how easy it is to not only explain the lack of energy, but to tailor it a lot of different conditions. Accessibility aids might be that charging cable. Disautonomias could be the abrupt crashes or glitchy software. It seems all too easy to match cancers and autoimmune disorders to computer viruses and airplane mode. It’s relatable, too: Many people have fought with a piece of tech that has suddenly stopped working properly.

There are always those people who insist that, even though they’re not ill, they count spoons (or battery percentages). Only so many hours in a day and so much energy, after all. The ease of these analogies is also a weakness. Since everyone has experienced a tech glitch – or running low on flatware – it’s sometimes difficult to make someone understand that this is different. This is constant, and there’s no replacing the phone.

That’s why in my version there’s one last part to the spoon/battery/cell phone explanation of chronic conditions, a step no one but the performer in this sometimes emotionally-draining vignette even realizes exists. It’s the final curtsy in this awkward little dance, a closing movement that most chronically ill people already know, but to skip it would be lax.

It’s all right. You tried to explain. You did your part. When the weather’s cold, butterflies migrate. Leave, and use some of that valuable charge on a new app instead, or a shiny spoon for slurping soup. ๐Ÿ™‚