I was in the hospital for a month recently. I was able to see the conditions that nurses were working under. It was bad. I am 100% behind their efforts to fight for their rights, which were gearing up even while I was hospitalized: Nurses were carrying signs through the halls, going places with them, wearing buttons, talking about things. This has been prolonged and their signs are now all over town.
Amidst a tense contract bargaining negotiation, nurses at the University of Vermont Medical Center announced at a press conference Friday morning that they had filed a complaint against the hospital with the National Labor Relations Board. The nurses allege twenty labor violations, including unlawful unilateral changes to staffing grids and unlawful ordering of employees to remove union buttons.
Julie MacMillan, a registered nurse and the union’s lead negotiator, said the nurses feel the community should be aware of the problems at the hospital. She said in past negotiation cycles, when the hospital was not in as good financial standing, nurses took cost of living adjustments so that they could keep serving the community. But now, as the hospital reaps enormous contract margins, she said the nurses have had enough. MacMillan said the union has been inspired by the successes of other labor movements across the country.
I hope they meet all of their goals. The conditions they’re expected to work under are ridiculous. They are right: This is a safety issue, both for nurses and for patients. I constantly saw nurses having to fight just to do their jobs under the amount of work they were expected to do. All the ones I saw were trying very hard to help all their patients, and couldn’t. One said she spends half her time on the job not doing nursing care, but ironing out problems caused by the hospital bureaucracy. Watching her, I believe it.
And the conditions really are dangerous to patients — I was frequently in danger not because of malice or indifference, but because they were having to spread themselves too thin. Which results in things like not noticing I take seizure medications. Or one situation where I could no longer perform a small but vitally important medical task I normally do for myself, a nurse offered to do it for me, and I had to explain to her that I greatly appreciated the offer but that there was no way she had the time or resources necessary to do it. Most of the dangers I faced from the hospital this time were tied in some way to short staffing, not to anything malicious on the part of the staff. Who went out of their way to help as many patients as they could as thoroughly as they could, but nobody’s superhuman, and the long hours and lack of sufficient staffing take a serious toll. Nonetheless, people were being their own small, quiet versions of Vasili Arkhopov every day — following their consciences even when it might be easier not to, and profoundly affecting, even saving, lives as a result.
Which is why there are signs everywhere that read NURSES FOR SAFE STAFFING and the like.
Safe, if you’re wondering, means patients don’t risk death or serious harm from the lack of adequate staffing. The nurses I met this stay were almost all amazing, dedicated, and trying their hardest. But without enough of them, without the resources to do their jobs, that’s just not enough.
I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.
Procedural memory, or implicit memory, is how you just know how to do things. Especially physically — the classic example is riding a bicycle — but other ways as well. Procedural memory is not only rarely a problem for me, but often a strength. It’s why I’m such a good touch-typist, among other things.
Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something. You remember facts, and events, and words and concepts associated with them, and those sorts of things. That’s declarative memory.
Sometimes I gloss over the intricacies involved here and just say I have memory problems. But that’s not entirely the case, even though it basically functions as memory problems And it’s not a consistent thing even when it does exist. And it’s not like I just, across the board, have trouble with memory. Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.
As mentioned, my procedural memory has been excellent for as long as I know. So much so that I almost overuse it to compensate for fluctuations in declarative memory. So much so that I use it as a gateway to declarative memory in certain ways.
This is important: This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual. Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen. Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have. They never look at it as another variation on what humans can do. I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.
Anyway, back to memory.
So, my memory issues are probably in several areas, but the biggest one is simply a voluntaryretrieval issue. In other words, it’s more about my general inertia than about actual problems with memory.
Inertia, for me, is all about volition. Which is the ability to do things, directly, on purpose. It’s not about the want to do things. It’s not about the ability to do the things if the ability is triggered properly. It’s about getting from want to do. Most people have very little idea that there can even be a gap there. For some people, that gap is so wide that we get various medical labels: catatonia, Parkinson’s, apraxia.For some people, the gap is wide enough to cause trouble but it goes unrecognized,
Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action. It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.
There’s a handy chart that I always pull out at these times. It was developed by Martha Leary and Anne Donnellan. They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:
Anyway, you’ll notice memories at the end of that list. Like thoughts, perceptions, and emotions, those are not what people normally think of as actions. But they are actions. My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways. And memory is far from unaffected.
So I have what seems to be an inconsistency to my memory: I can’t recall things on purpose, and at any given time I can’t recall most things. When people see this, and they see it often, they say I have a terrible memory and leave it at that. And I test badly on most formal tests of memory.
If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.
Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like. I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known. Generally — not always — when I have access to a memory, my memory is extremely good. Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.
Good doesn’t mean perfect. It just means good. My memory is as fallible and malleable as anyone else’s. Anyone who thinks theirs isn’t is fooling themselves. But I often remember details others don’t, and I remember things more accurately on average, when I do remember.
I cover for the lack of access to most of my memories in a variety of ways. One is by relying on procedural memory for more than most people rely on it for. This gives the impression of more competence. I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all. And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues. I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.
So there’s a problem of access to memory that has to do with inertia. And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.
But there’s more to it.
Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.
Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly. After a time (days, weeks, months), those recent events come back into memory.
When I’m delirious, I’ve lost memories . Sometimes even after I’m not delirious anymore they never come back. I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious. When I got better I got back that period, but lost a couple months in between, never returned.
But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function. But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.
And it does come back.
But the world is a very weird, scary place when most of is blank.
Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.
I have recently begun telling people about this because my friends have told me to hide less from them. But it’s frightening. I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions. And that’s dangerous. There are reasons i cover for it.
But understand that I am always covering for it. This never goes away. It’s never not been there. There are additional issues over the years what with delirium, but this happens all the time. It happened to me pretty extremely this week because of an overly long, tense medical appointment.
And I’ve given you the simplistic version. There’s a lot more to it than this. Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that. And I need to be more open about how my mind actually works. There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear. I’m tired of covering for thm.
A lot more of the time than I let anyone realize, most of the world is blank.Most of what happened is blank.Most of what is supposed to be background knowledge is blank.Most of the past is blank. Lots of the present is blank.Lots of things are blank.
And to let anyone know is terrifying.Because I don’t want people to ever realize how much I sometimes don’t know at a given time.I’m afraid of what would happen to me if people knew.
The world starts fresh over and over for me, fresh from a moment.I start not knowing where I came from or what is happening and I wing it.Over and over.I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.
Eventually, eventually it all filters down into awareness, memory, and I can write about it: I just appeared where I am.I don’t know how I got here.I don’t know what led up to here.Everywhere I look is blankness.This is a common thing.
And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.And since people don’t expect such level of blankness it works in some circumstances.I haven’t even managed to convey the half of it.But I probably never will.I’ve tried.Hence this.
So what do I do?
Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.
There’s very little he’ll leave alone, if given the chance.
But the more I think about it… I like having a memorial shrine, I will put it back together again, but the cat will knock it over again unless I buy some museum putty or something, which I’m not sure I’m willing to do.
And the more I think about it, the more fitting it is that my dad’s things are sometimes all over the house, reminding me of him in everyday life.
I sleep with his rocks in my bed.
I wear his clothing.
I find things he owned everywhere.
I use his tools.
I’ve said before that objects are my best form of communication. With my father, this is true. All of his things don’t just each remind me of him. Each one had a specific relation to him.
Taken together, they point back to who he was with the precision of a laser beam.
And they will do that whether they are properly arranged on the shrine or scattered everywhere by the cat.
And I love remembering my father. I love finding him in my current life, in who I have become. I love relating to him in an ongoing way even though he is dead. Because who he was can’t be erased and his influence on the world still exists and will always exist.
I don’t idealize him the way some people do when someone dies, though. I remember the worst parts about him. But I don’t feel like I’d be remembering him if I did otherwise. It would feel like an insult to his memory to turn him into an image of something he never was.
But I also don’t feel the horrible feelings most people expect with grief, for the most part. I feel like he is still in my life, just not present. His things remind me of who he was, and his influences and actions ensure he’s still around in everything I do. I still have an ongoing relationship with him. Most of the time I remember him with joy.
Bottom line is, I love my father. And maybe sometimes overzealous kittens make you put things in perspective. Remembering my father is not confined to one part of the house, it is integrated into my life. Memorial shrines are a good thing, don’t get me wrong, but having them disrupted can make you think.
AIDS is something that slowly absorbed into my awareness, despite a lot more barriers to comprehension than the average child would be dealing with. This is my best rendition of my child’s understanding, looked back on with adult eyes.
I was a child when I first heard the word AIDS, and like most words at the time, I didn’t understand it but it recorded itself in my memory. Well — not AIDS as a single word, but rather the full phrase AIDS antibody test, which ran together in my head because news reporters repeated with a tone to their voice that meant it was important. I stored it as important with no comprehension of any of the three words.
Later, it became important in another way. I was learning to use words with minimal understanding. I had worked out a rule I could use — if a word seemed to be used in many different contexts and have vastly different effects, I would not use the word. Aides were people who existed in the classroom, aids were something else entirely, and AIDS was a word you heard all over the place. I didn’t know they were different words, or how they were spelled. I didn’t do this with all sound-alike words, but only ones that fit certain patterns I still can’t articulate. I just knew better than to say any of them. So for many years, I never said aides, aids, or AIDS.
On the playground, children ran around tagging each other. As they touched each other, they’d say “Tag, you’ve got AIDS. Tag, you’ve got AIDS!” It wasn’t like regular tag. Each child would run around touching other children one by one on the arm, saying “You’ve got AIDS,” and then some of those children would run around doing the same thing. They weren’t playing tag, they were playing a plague game.
As I got a little older, I learned a little more about what AIDS actually was. My mom’s friend Matt (not his real name) from work got AIDS. In the process, he was outed as gay at work. This was a hospital, everyone involved were healthcare workers, and he had tons of friends there. By the time the dust settled, my mother was his only work friend.
I didn’t spend much time with him, but we did go with my mom up to Filoli Gardens once. It’s the only time I’ve ever been there, and I will always associate it with Matt.
I was a child and I picked up child things from this. I didn’t know what gay meant — it was another word I would not use because of multiple meanings that fit a certain pattern. I saw that he looked sicker and thinner every time I saw him, and one day my mom said he was dead.
I remember Ryan White, a boy with hemophilia, contracting AIDS from a blood transfusion, and hearing on the news how he was shunned by his entire school. I remember him dying in 1990.
I was a little more able to understand things by the time Guy Nakatani started speaking at schools, including two schools I attended. I still didn’t understand the moral weight people gave to AIDS or being gay. Guy Nakatani had AIDS and talked about its effects on the body, and the effects of the treatments back then on the body, and that much I could grasp. I remember him saying that he would talk about anything about AIDS except how he got it. He said that people divided people with AIDS into innocent victims and deserving victims, and that he didn’t want to say anything that could put him on either side of the divide. I didn’t understand the reference. I’m pretty sure the other kids did.
I remember the second or third time I saw him at a school. He was so thin he couldn’t sit down. I had read in the paper that he doesn’t disclose how he got AIDS, and his reasons. The paper had then gone on to say he’d gotten it from gay sex. I understood enough to know this was horribly cruel and unfair.
I was in high school now. I had some idea what gay meant. I did not understand my own sexuality yet, but it gave me great amusement to learn that the only person friendly to me in that school was also gay and in the closet. Everyone thought we should be dating, or were dating. Nope. I’d come out as bisexual in a year or two as one of the first steps in my coming-out process, which I know makes me a tired stereotype but it’s what happened. I’d be 19 before I could say the word lesbian about myself, and that was a long way off. And even longer before I could articulate anything even vaguely coherent about gender.
There was one openly gay boy in my high school. I heard everyone talk about him when they thought I wasn’t listening. They said that he only was out for attention. They said he read gay magazines in the student lounge for attention. He transferred to another school across the country. Then he ‘burned out’ and had to come home. I later wondered how much homophobic bullying had to do with that.
Likewise, there was one openly gay guy in a student organization I’d drifted into. (I drifted into a lot of things at that age without a lot of intent or agency involved. I understood a lot more, but was hiding at least some of my continuing incomprehension without actually trying. It’s just how I operated. And I ended up doing everything from joining organizations to choosing majors in this manner.) It was kind of like a debate club.
I remember there was a debate about gay marriage. And he said he wanted to meet a beautiful man and then marry him. That line from his speech, and the emotion he said it with, was the only one I understood. But I understood it. I heard people gossip about him, too. They said he wouldn’t be such a big deal in the organization if he didn’t use being gay to get attention. Like when I was younger, I didn’t evaluate those statements for meaning for many years. But I remembered them, and I still remember them. For what it’s worth, as is obvious, I couldn’t disagree more.
So Guy Nakatani came to our high school, just as he’d come to my middle school. It was just after that horrible newspaper story had been published. He looked exhausted, weak, and sick but he wanted to continue educating people about AIDS for as long as humanly possible. He tried to do so.
I don’t remember most of the questions, but I remember one One student raised his hand and said, “How did your parents react to finding out you were gay?”
Guy Nakatani was silent. The whole room was silence. There was just an eternity of awkward, stony, defiant silence.
And then things moved on.
I later read in the paper that Guy Nakatani had died.
In health class at school, when they covered the topic at all, they tried to tell us everyone could get AIDS and everyone needed to use comdoms. One day, they had a gay couple come in. One of them had AIDS, one didn’t. They were sexually active, with protection. Later I heard both kids and adults condemning them.
That same year I saw Guy Nakatani the last time, and after I’d crashed and burned and had to drop out of high school, my mom told me that her friend’s daughter had just died of AIDS. She wanted to get rid of all her clothes, and wanted to give them to me.
I thought at first that her mom had just given me all of her clothes. As in, all her clothes from her entire life. Because there were clothes that seemed like they were for children. Young children.
My mom explained to me that the clothes that were too small for me were because she’d gotten so emaciated towards the end of her life that she had to wear children’s sizes. I never forgot that. And I always remembered her when I wore her clothing, even though I didn’t know her and never met either her or her mother.
Objects tell stories of their own, and they talk to me better than words do, so I have never forgotten her. I wore her clothes and I wore her shoes, and I still wear a pair of shoes in the exact make and style of the ones her mother gave me.
I only dimly registered the major AIDS battles that were heating up the country and the world throughout my childhood. I didn’t know about ACT-UP, although I’m sure I heard of their activities in the background and didn’t connect them (I did a lot of that). I didn’t have the opportunity to look for information or ask questions, I didn’t drift in that direction. But as I drifted through life — which is what I did back then — I drifted near enough for AIDS to penetrate my awareness for as long as I can remember picking up on words at all. And it’s weird the things you remember…
Remember that history is made out of each of us all put together, ordinary people, and what we remember of it is important. I may not have understood everything being said and done around me, but I absorbed it all. This may be a bit of a dismal post for Pride Month, but this is what I grew up with. This is part of our community’s history. And it’s important to remember it all.
Everyone deserves to decide what we will discuss about ourselves, and who we will discuss it with, and when, and where, and how.
Everyone deserves to decide what we define as private in a certain situation.
You don’t give up your right to privacy because you have discussed something before. You have no obligation to discuss it again.
You don’t give up your right to privacy because you have disclosed something most people consider highly private and personal information.
You don’t give up your right to privacy because you consider something highly private and personal that most people would not.
I find it relatively easy to discuss the fact that I have been molested, a thing that most people consider highly private and personal.
I find it harder to discuss other abuse that most people would consider less serious and also less personal.
Because sexual matters are generally considered more personal, and non-sexual abuse is usually considered both less personal and less severe than sexual abuse.
But this is not how I experience these things, and I have every right to choose which one of these I discuss. And where I discuss it. And with who. And how.
I have a right to discuss information about myself that most people would consider private and personal.
I have a right not to discuss information about myself that most people would not consider private and personal.
I have a right to choose when, where, and how I will discuss any of these things.
I have a right to change my mind on things like this.
And so do you.
Why am I writing this?
Lots of reasons.
But one is that there’s a culture online of making you disclose certain information about yourself, or expecting that you disclose it. Not even as a matter of discussion, just as a matter of course. You’re supposed to put it right up on the front of your blog, in some circles. And it’s a problem.
There’s a thing where you’re supposed to list in which ways you are marginalized and in which ways you are privileged. I’m not going to get into the assumptions made here about a shared vision of reality in which you can sum such things up in a word or two. But even disclosing this information can be private for some people. Failing to disclose this information, and having to explain why, can be private for some people. Discussing why they do or don’t agree with the entire system of seeing things can be private for some people. Discussing the complexities of the person’s actual position with regards to some kind of oppression can be private for some people. All of these things and more can be private, and the expectation itself can create invasions of privacy, as well as a sense of obligation to disclose private information.
Asking people’s preferred pronouns can be an invasion of privacy.
Demanding that everyone present tell their preferred pronouns can be such an extreme invasion of privacy that some people will never show up or will go away.
Discussing gender can become an invasion of privacy when people are expected to disclose anything from our actual relationshp to gender, to our relationship with our bodies. Some people don’t want to be open about such things. Some people know it will endanger us to be open about such things.
And sometimes what we want to discuss requires the disclosure of private information in order to discuss it in a way people will understand. And sometimes we decide to do so, and sometimes we don’t decide to do so. Sometimes other people’s expectations play into this. Sometimes they don’t. This can prevent us discussing certain topics altogether, or prevent us discussing them in a way that really shows what we think.
At any rate, you have every right to decide what is private information for you right now, and not to discuss or disclose it except when you want to. You have a right to decide whether you will discuss it. You have a right to decide in what manner you’ll discuss it. you have a right to decide when you’ll discuss it. You have a right to decide who you’ll discuss it with. You have a right to decide how you’ll discuss it and what you’ll discuss. All of these things are part of your right to privacy. And you’re allowed to exercise that right.
“I tell my story not because it is unique but because it is not.”
It comes in four versions — cowl, short shawl, long shawl, and cloak.
I went for long shawl. I wanted to make something for myself that I could wear in the cold Vermont winter and actually get some heat from it. And also that I could wear at times like now, when some of my health conditions make me feel more chilled than I ought to.
It’s finished according to the pattern, but I’m not actually done with it yet. The original pattern has a way you can put ribbons in some of the openings. Instead of ribbons, I plan to continue on the forest theme and crochet plant roots or something, and thread them through the same holes like ribbons. Haven’t got there yet, but planning it. Given some problems with getting enough steroids through my J-tube (the stoma leaks, I’m gonna have to get the entire stoma re-dug somewhere else), I’ve been freezing in the middle of summer, So I’m wearing this thing right now, as I work on the final pieces.
It’s pretty hard to describe the exact style of this thing, but it has a high vertical striped collar that buttons with wooden buttons, and then uneven horizontal stripes going all the way down. The colors are various shades of dark and light green, brown and tan, and assorted shadowy greyish-blues. It really does resemble a mottled forest sort of colors.
I am not disappointed with the comfort at all. This is soft wool that’s very warm and very suited to my needs right now. I also used some basic brown wool yarn for the trimmings.
The difficulty of the pattern was… weird. The actual stitching was not difficult. But trying to work out what was meant by the stitches mentioned, was. I did not completely follow the pattern, I deliberately made it larger to accommmodate my size, and also had some accidents with understanding the pattern that I was able to work around without any problems. The real challenge was just figuring out what was meant by some parts of the pattern, and especially at the beginning I had to rip a lot of things out before I figured out what the intent was.
Overall I’m thrilled with the result and eager to put on the finishing touches of decorations, even though I haven’t decided quite what they’ll look like yet.
This morning I watched a TED talk called Don’t Regret Regret. Now I wonder if my big regrets are somehow weird.
This is a graph they used to talk about what people most regret in their lives.
Most of my regrets are failures of love, failures of ethics, ways in which I have wronged people, and I don’t really see those listed although some of them could fall under self, family, friends, spirituality, and community, if you stretched them.
I do wish I’d never set foot in a school, but if you asked me to list my biggest regrets that wouldn’t even come up in my head, so i’m surprised education and career are so high.
Possibly the thing I’ve done concretely in the world that I most regret is something I may never be able to discuss in public. And that’s okay — privacy is a thing. Just because I talk about a lot of things other people see as private, doesn’t mean I don’t have a right to determine what I am private about. But I can say that I did what I think was a profound betrayal of another human being in the way I used power over them. It wouldn’t have looked like much — or like anything bad — to most observers, but most observers wouldn’t have known shit about what they were looking at. It was bad, I am sure it hurt the person, and I have a hard time forgiving myself for it.
I also regret a lot of things I took part in that I am told that because of my age at the time I really wasn’t 100% responsible for them, especially given what I was led to believe by my family. (Sorry for being overly crytpic here.) But it makes me wonder at what point a person becomes responsible. Which I suspect depends on the situation and the person, rather than being something set in stone that just happens.
At any rate, I have tiny regrets that fit parts of this graph, but my big regrets really aren’t on or near the top of the chart here. Or on the chart at all. The little regrets are ones that might come to mind time to time, but are easily banished and forgotten. And that would certainly not pop into my head if you asked me to name 12 or even 24 things I regretted.
I wonder if I’m weird or if the way they came up with this graph somehow doesn’t represent how most people would see their regrets.