12:43am February 19, 2012

“

Four years ago, I was operated on for oral cancer. For a week after the surgery, I breathed through a tracheotomy, was unable to speak, and communicated by slowly and shakily writing notes on a stenographer’s pad. My mouth and throat were filled with a seeming ocean of mucus following the surgery; I relied for my survival on the wall-mounted suction machine, with its long hose and hard plastic mouthpiece. The hose and mouthpiece often clogged; I would clear them by dipping the mouthpiece in a glass of water. When that didn’t work, and the hose or mouthpiece needed to be replaced, I had only a few minutes “breathing space” before I would begin choking.

One afternoon, the hose and mouthpiece both clogged, and I waited an endless-seeming 15 minutes until the nurse responded to my buzzer. When she asked me why I had buzzed, I started to write, “My suction is clogged – the tube and mouthpiece need to be replaced.” I wrote MY SUCTION IS… and the nurse started out the door, saying, “Oh, I see – you need a new mouthpiece – I’ll get it for you.” I knew that merely replacing the mouthpiece wouldn’t work, and I was already gasping for air. I flung my notebook at her, and hit her in the back of the head. Startled and angry, she came back to yell at me; I kept pounding my pencil on the table-top and gestured, until grudgingly she returned my notebook to me. I scrawled my panic-stricken message in its entirety, making sure she did not leave until I was done. “Oh,” she snorted, and with ill-grace returned a few minutes later with my precious suction hose. I’m sure she went home that night to tell someone about the rude patient who had attacked her.

”

Mayer Shevin

This sort of situation terrifies me. Even in less urgent situations. I just had a problem with an LNA who refused to let me finish typing something vital to actually getting services on schedule. I sort of yelped and she did that super-authoritative super-offended “don’t shout at me” thing but had no clue that this is what happens when I try to communicate under time pressure when someone threatens to leave in the middle of an important sentence because they don’t want to bother waiting for me to finish. If I hadn’t intervened in some way, she would be skipping several days she was assigned to work with me, doing stuff that’s important. Not rapidly life threatening but still important. And people so often don’t want to wait that extra few minutes and don’t get the huge communication disparity between us or that they are taking advantage of it. I have even had people walk out the door and refuse to give me any assistance because of what that pressure and panic does to me. (Nothing that would do them any actual harm but they sure act all affronted anyway.)

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