Long thread in which I over-share on the internet to complain about a gap in the #bioethics literature because I'm feeling introspective and also kind of bored /1
#Disability #medicalhumanities
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The first time I set up my tube pump, it took me 45 minutes. I was so frustrated I cried. Now it takes me five minutes. I don't even have to think about it. /7
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I figured out how to tape it to my face the right way (hint: not the dumb way they tape it at the hospital). I figured out how to put on shirts without snagging it every time. I figured out how to pin it in my hair so it stays put. I learned what to do. /8
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It was so hard at first because I was a tube novice. I'm not any more. And part of why I'm less reluctant to go through this again is because I know I have that skill to fall back on. I've got this. /9
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I don't think any of this is adaptive preference. I still, other things being equal, prefer not to have the tube. I just rate the tube as less bad than I initially did, in part because the experience in fact *is* less bad once you acquire the skills to deal with it. /10
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I also don't think it's just hedonic shift - I'm sure part of it is that the discomfort of the tube has slowly become white noise as I've gotten used to it, but that's not the whole story. It's also that I've learned what to do to manage the discomfort. /11
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And I definitely don't think anything about this experience has been transformative - I am the same person with the same preference structure I had before, now with extra added silicone piping. Everything about having a tube has been dull and nothing has been enlightening. /12
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I don't really think much about my preference structure or my overall desires have changed, really. What's changed is what I know how to do, and my confidence in what I know how to manage. And that kind of skill has a huge impact on these kinds of experiences. /13
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So many medical transitions like this are hard in part because you basically learn to swim by getting thrown into the deep end. And getting thrown in the deep end is easier - even if still unpleasant - once you know you can float. Thank you for coming to my Ted Talk. /14
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