GoKawiilWhat it's like to have the machine that keeps you alive die while you're on vacation
28 May, 2026
I'm about to tell you a story about the major disaster which affected much of my decisionmaking on my week-long vacation to Santa Fe. I just got home to LA, and the situation is now resolved. But it was super fucking annoying!!
I didn't mention it in any of my other posts because I was waiting to learn how it would actually resolve.
I know a lot of people whose lives depend on access to medicine. I know fewer other people whose lives also depend on the machinery and software used to dose that medicine. Insulin pumps, pacemakers, and other crucial, always-on medical equipment are crazy useful but also contain the possibility for insane frustration and resentment. I've been pretty honest over the years that I value having an insulin pump, but that I also hate the manufacturers and designers of every pump I've ever used. If you introduced me to any person who has ever designed an insulin pump I've used, I would probably punch them in the face and cuss them out in front of their children. Every single pump I've used as caused me massive problems - though none as bad as the one I'm about to describe.
It is not possible - for me, anyway - to have a neutral, positive relationship with the machinery that keeps me alive. Every problem it has is an indignity and an insult to me. Anything it does that irritates me is a sin. Universal healthcare would make my life easier, for sure. But the irritation I feel whenever I have to deal with a pump problem will never go away until diabetes is cured.
Until then, the people who design, sell, and service these machines are both keeping me alive and also my mortal enemies. I think that this is an inherent effect of being dependent on a tech company to stay alive. You can treat the following story as a window into what that experience is like for a patient.
If you work for the company that made the pump I'm about to complain about: I fucking hate you, and I hate your pump. This is the deal you made when you decided to make machinery that keeps me alive.
There's no way out of it for either of us; it's just the dynamic we're trapped in.
Though I'm trapped in it much more than you are, aren't I?
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