Too much for me to cope with, or even fully describe, and for reasons that will quickly become clear, I have get on with household tasks very soon now, so this has to be abbreviated.
Today is Thursday, the now-standard day for stripping the bed, washing the bedclothes, and putting on fresh sheets. I do the first part of this, slowly but efficiently. My helper J does the new sheets part, because that’s difficult, painful, and tiring for me — tends to take nearly an hour, because I have to stop and pant and rest every so often. It takes J a few minutes, and he then goes on to a big set of household tasks (while I do another load of laundry, for my clothes.)
J did not appear. After he was half an hour late, I mailed my care agency; they eventually said that the agency subcontracting J had moved him to another project, and he wouldn’t ever be back. One of the managers would come to see me at 12:30.
Terrible blow; J did many useful things for me (and we had some future projects I’d bought materials for), not the least of which was being an actual live person, smart and resourceful and good company, someone to talk with when I get a social visit from non-helper friends every two months at best.
I was dithering about how I would even get through the day when I checked the balance in my credit union account and discovered that the Social Security people had deposited a gigantic one-time windfall (it’s complicated, but the money’s entirely genuine; I learned about these payments from Barbara Partee a while back and realized one would come to me eventually, and there it was). So I could order a couple of meals without counting the pennies.
The 12:30 meeting was a push to start getting me ready to sell this house and move to a residential community. Endless complexities, with lots of reassurance that I could just reproduce my workspace in such a community. I had to keep reminding people that I worked full-time on a professional career, and needed the resources to do that, and someone to take over a lot of daily things so that I could do my job. I foresee lots of promises that all of this would be easily taken care of, followed by the refrain “Oh, we couldn’t do that!” and the like.
Meanwhile, I have an enormous amount of stuff to get rid of. Including most of the stuff that makes this little condo an art show and eccentric museum. My caregiving agency is looking for someone new to give me a hand with daily life and to help with the transition to a new place.
But now I have to make up the bed, water the garden, take out the trash, and much much more.
June 5, 2025 at 7:30 pm |
Ugh. As an internet friend I can do nothing except offer my sincere condolences, but you have them for what they are worth. I hate that you have to move and wish you had other options. I was fond of hearing about J. He seemed intellectually curious and a very good help besides. Our world is so needlessly cruel sometimes.
June 6, 2025 at 8:22 am |
Thank you. I’m actually resisting the idea of moving (which is being pushed on me for financial reasons), when I have gone to such lengths to develop routines that I can manage with my disabilities, and an assortment of tools and utensils that make life safe and easy for me; while I am reassured that everything can be reproduced in the new environment, this is in fact pious bullshit. It will turn out that most of this will have to be abandoned (“Oh, we couldn’t do *that*”) and I will have to learn to survive in a totally different and alien environment. I have done this before, it comes with terrible losses, and it requires abandoning almost all those carefully acquired skills.
So much to fret about.
June 6, 2025 at 6:07 am |
I’m so sorry to hear this. I hope J is okay, and it’s horrible that you didn’t get to say goodbye. I wish you the strength to deal with all the changes you face.
June 6, 2025 at 8:42 am |
My first fear was that J had been picked up by the goons of ICE, but no, he was just redeployed by the care agency that has his contract. My care agency is searching for a replacement, at least for the moment, from a different subcontractor. At times, all these negotiations sound suspiciously like human trafficking, just moving people around.
Meanwhile, I’m not facing the changes well, having spent several years crafting a manageable life that allows me to do my work.
June 6, 2025 at 7:12 am |
That seems like a really significant change, and I can just about imagine how stressful it is in the moment. But it may well make your life easier in the long run. Condolences on the loss of J, who seems like a really interesting person.
June 6, 2025 at 9:07 am |
Well, yes, high stress. And I’m still in DEI stress, wondering if Stanford’s going to get rid of me, or whether one of our overlords will move to ruin me by suing me or arresting me (Ted Cruz was sniffing around a while back, but hasn’t moved on anything yet). I’m a minor figure in the world of social justice warriors, but that cuts both ways.
(Many many years ago, before Jacques, Ann woke me up early in the night to ask me a question. “You do know that if the revolution actually comes, we’ll be the first to go, don’t you?”
To which I replied: “Oh yes — too conventional for the revolutionaries, way too revolutionary for the government — yeah, I get that”.
“Good”, she said, “I just wanted to be sure” and kissed me, and went back to sleep.
Meaning that we were in this together and weren’t going to change our way of life. Yes, I understood.)