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10:30am April 30, 2013

I’m trying to read stuff by people who work in hospitals.

Not by the people who sit around snarking about patients on their blogs. But by people who make some actual effort to care. I feel like understanding their motivations and biases is vital to my survival.

Already I’m seeing stuff indicating that once you get a feeding tube, a lot of people pretty much write off your life as over. They don’t see themselves as writing you off. They just automatically see everything beyond that as not quite life. Just like they see life on a ventilator. And since people with feeding tubes are routinely sent to nursing homes, that becomes part of the whole mythology too, even though there’s nothing about nursing homes that is actually necessary the way they are now, but everyone thinks it is.

I guess I knew this already, but it’s weird to read it on paper. It’s weird to read yourself being written off by people who are going to great lengths to present themselves as giving a shit about their patients’ lives.

I also read about people who are trying to show people what various medical conditions and procedures look like (from the worst possible perspective, of course), in order to try to influence more people into avoiding lifesaving measures for themselves and their loved ones. And they honestly see it as doing people a favor. They don’t know how horrifying it is to people who are already the other side of such things and very much value our lives.

I’m pretty sure the rest of my life is going to be a fight against that kind of mentality.