And the thing I always thought, through this whole process, was that I’m about as resourceful and well-positioned as a person could be to get help and information from the system. What would it be like for someone who is not good at online research, or at reading complicated language, or who didn’t have as much time to devote as I did?
— Misha Glouberman, “The Residents’ Association,” in The Chairs Are Where the People Go
Some people read directions, and some just plunge in. Some like to know what time the bus is supposed to come, so they can plan their trip, and others just go to the stop and wait until the bus comes and get on it.
I am a planner, someone who likes to look things up rather than wing it. My husband and I are in the months-long process of walking around the boundary of Seattle, and he mocks me, gently, when I take out my map.
When my father was starting to die, going in and out of the hospital a handful of times over the course of a year, my sister discovered that there was a special case manager for special cases like his, people with complex health histories and mysterious responses to standard care. In order to find this person, whose name and position were more or less unpublished, she had to make a lot of phone calls.
(Making phone calls is one of those things I respect deeply, since I don’t much like calling people I don’t know. My father was impressed when I made some calls to people I didn’t even know, but I don’t know if he knew I was doing it for him and wouldn’t have done such a thing otherwise.)
I sometimes wonder what life would have been like, especially the last three months of my father’s life, without A. reading and calling and writing and reminding and writing and printing and inquiring and reading and calling. My intuition is that without her, we all would have failed to get the care and make the decisions Dad needed.
Not every pursuit of detail is a life or death situation, but it certainly can be, or become. Misha Glouberman formed his Residents’ Association when a bar opened in his neighborhood and played loud music late at night, which may or may not be the most serious situation in the world, but which pissed him off at length. I can easily see myself in his situation, compelled to do the research and frustrated by the absence of satisfaction. Even my sister has found herself in a bureaucratic gap she couldn’t close, caught in a catch-22 that heating oil had penetrated with no one to fix the problem.
People with time on their hands, people who are accustomed to being listened to, people who read and understand fine print and know where to click and what questions to ask — even these people come up against a wall that might not have been created deliberately but functions as a barrier nonetheless.
People like me feel a need to look out for those who feel lost in details, though I’m a poor enough reader of fine print that I’m constantly having to fix problems of my own creation, especially those involving credit cards and paperwork for other people.
I don’t know if anybody is sitting around thinking they need someone to read the rules and interpret them, but if you do, or if someone you know does, feel free to ask me for help. I don’t know what I can do, but I can talk pretty loudly and clearly when the situation calls for it.