what to do

I have multiple doctors who watched my hands turn into agonising claws and I guess they felt sorry, but also have left it at half guesses and have yet to treat it as an emergency. So now I have lost the use of most of my fingers, and my hands are in constant pain and continue still to fold in and get further destroyed. They watched my knees freeze into a bent position so i can’t walk, and I guess  they thought what a shame, that looks difficult. But they haven’t  seemed fussed to find out fast what was going on, before my knees locked forever, too late for any intervention. I’ve had that for 8 months. Still no one seems to think its urgent to get them released. Some guesses and shrugged shoulders. They feel bad for me I’m sure. But my follow up appointments are months apart. They have seen my hip muscles freeze into a painful bend for almost 2 years. But were concerned with the lesions, not what was stopping me from moving. Or how to release them. I am still waiting for a pain clinic appointment. Now at least a year. They see me choke on water, and order a swallow test, which I’m supposed to get some time or other. I’m to wait for a call, even though i can’t drink and that is happening now and has been for going on two weeks. They know i can’t take  opioids, and at times they are annoyed, at others sorry. I asked for sativex, but have heard nothing for weeks now. Even though i am in pain 100% of the time. They nurses are worried about pressure sores, but the air cushion they gave me is agony. i can only sit on it for less than a hour at a time. They ordered a cream, but it hasn’t come. That was a week ago. Thats all there is they say.

So what are the reasons for the slowness of things? Is it denial? Overwork. Foiled by not understanding with no spare time or feeling to offer. Shrinking services. Expanding populations. Do these make a difference when one thinks about anger and action? D wrote to me about Freud’s concept of negative hallucination. The art of not recognising, as she explained, people who are present. She was talking about Trump politics. But maybe it applies here too. Not the art, I think, so much as the defence, the impatience, the weary resignation of not seeing who is present. So you can get on with your normal hands and your pain free morning routines. Do the things people do – walk, talk, eat, drink,  brush their hair and their teeth, cook their food. throw a ball, sew or type or some other fine dextrous activity. I am aware of people’s hands and i have stopped remembering what it is like to have them myself.


I’ve been watching youtube videos of food critics in LA, Chicago, NY mainly. Testing out eateries around the city. I guess I’m doing this partly vicariously since I can’t really eat anything anymore. But also I like the showcase of what immigration brings — wonderful food. All of the business owners talked about love and their communities and extending family, roots, memories, comfort, childhood. I am also kind of shocked at the amount of food places serve in the USA. I’ve always thought of myself as a fairly big eater, but even in the year of eating cake, i never put away as much food as I see served up in these videos. Every sandwich has butter, mayonnaise mixtures, barbecue sauce, six slices of cheese. multiple piles of meats, like five meals smashed into one pile. And then side orders and milkshakes or beers.  I wonder how people can eat so much without getting sick. I’ve always mostly shut down if there is too much food. Giant buffets. Big platters. So I don’t know how people do it. I don’t know if I could bring myself to try what is on view here, even if I could eat.

I now know of restaurants and food trucks all over Chicago. Does this mean anything.

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