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Scrupulosity and religion: another perspective

December 10, 2015

I haven’t been around in ages, but this topic seemed to fit a lot better over here. And, unlike some other places? Anybody who decides to “give offense” in comments here has fair moderation warning.

This is a long-winded mess, even by the usual standards. But, I did indeed end up distracting myself some with the some of the influences on my own personal mess of OCD scrupulosity. Which I didn’t even recognize as such until the past few years, as different as some of it ends up looking from what usually gets talked about.

As I mentioned, I had also tended to assume that it looked different, in part, because none of it was overtly religious in nature. But, now I am really not so sure about that. It’s hard to separate that out from some cultural influences in general.

I couldn’t help but think of some observations in a paper from Robert K. Thomas, an anthropologist who grew up in a Cherokee speaking home. Some of his writing has come up before here, yeah. It was written in I think 1959, and some of the language used shows it. The other disclaimers from when I posted it before also apply (through the link below).

But, he made some extremely good points in this paper that I hadn’t considered in exactly those terms, around religion in particular. I had actually meant to talk a little about that in a more general context at some point, but I guess this is as good a time as any, while I seem to have the spoons available.

“CHEROKEE VALUES AND WORLD VIEW” BY ROBERT K. THOMAS ›

Quoting more than I had intended, starting with a bit of relevant background info. Given how unfamiliar most readers will be.

Any authority given to one individual to wield over another is immoral according to Cherokee standards. This would be real interference and “giving offense.” [more on that later -U.] In the old aboriginal structures and institutions lack of hierarchy is apparent in the structure themselves. Cherokees have taken over institutions from white culture which, in their form, imply authority. However, they do not work this way in a Cherokee context. The various offices become only positions in their institutions and imply nothing more…

To say “He knows a lot,” is a compliment in Cherokee. Knowledge is almost a commodity and one can be called stingy with “what one knows”… So a man becomes more knowledgeable by experimentation and a kind of “rational” thinking, a very different process from acquiring power…I am not going to belabor this point, but I think one can understand better Cherokee’s reaction to whites and the whole course of recent Cherokee history if one remembers what a “pragmatic,” “rational,” seeking-after-knowledge view of life Cherokees hold.

Then we get to the part that practically had me rolling in the floor when I first read it, because I recognized myself and so many people I know in these observations. When I say a lot of my family is nominally Christian (mostly Methodist or Disciples of Christ), and more than a few of them would strongly object to that characterization? This is exactly what I’m talking about.

He was talking specifically about Oklahoma Cherokee, but so much of the same stuff applies to other people from related cultures. (And also to 16th century Northern Iroquoian people, going by some of Barbara Mann’s observations based on old accounts.) AFAICT more of my family started out Tutelo, but it still applies well.

What really bothers me methodologically is that Cherokees sound so much like other American Indians. You could, almost, substitute the word Cherokee for much of the material present on Navajo values or Chippewa, and so on, around the country. We haven’t the terms to really describe this behavior and thus differentiate, except at a gross level…

The author also made that observation, so yeah.

Cherokees have no real conception of sin although they have been Baptists for over one hundred years. Actions are judged not in relation to the inner man’s relation to some strict prohibition but as to whether his action disrupts the harmony of the group or not. For instance, old Cherokees will say, “Drinking is bad” or in English, “Drinking is a sin.” But, if you pin them down to a case, they will say a man is doing right or wrong in relation to how his action affects the group harmony. A man who drinks and who does not “bother” anyone is not doing wrong. Drinking is wrong, on an abstract level, because usually this is when Cherokees become aggressive. But judgments are made situationally…

Let me just say a word about how Baptist Christianity has affected this philosophy. Cherokee have assumed the basic nature of the universe and interpreted Christianity in this light. What has happened is that Jesus’ moral code has bolstered the old Cherokee values, and, in fact, they have become one and the same thing. But Protestants have failed to put across Protestantism as such because Christianity is presented to another people on too high a level of assumption and as bits of dogma. Cherokees know little about whites and, probably, could not see the connection between the white man’s nature (covert culture) and Protestantism even if they understood the whites. Even some parts of Protestant dogma which Cherokees have understood they have ignored. Consider the Cherokee view of sex relations. They have responded to those things such as Jesus’ morality which makes sense in terms of old Cherokee ideas; have ignored other parts of dogma which did not, except in terms of lip service, and have not even understood that there was a whole different idea of the nature of man and the universe involved in Protestantism. Really to make Cherokees into Baptists you would, in fact, have to remake the individual Cherokee and his whole community.

(Not that some people haven’t been trying for a long time, as witnessed by Daniel Heath Justice on Queer Indians and the Cherokee Nation. Which would seem to demonstrates a rather distressing level of success in at least some respects, at least among the people who even want to run things in Oklahoma since the 1950s when Thomas made these observations. But, I am not necessarily going to assume that the people who want to be in positions of power to where they can meddle are really representative.)

Which kind of leads into something else:

Notes supplied by John Gulick after personal communication with the author.

…2. Although the major Cherokee sanction is withdrawal resulting in the social isolation of the offender, the ideal Cherokee interpersonal behavior involves non-interference and leaving other people along [sic]. In the white world-view, the Cherokee ideal itself seems to be a species of social isolation, and therefore the relation between Cherokee sanction and ideal seems paradoxical. Why should the sanction be effective among people who appear to be “rugged individualists” of the Daniel Boone sort?

The answer appears to be that the Cherokee is not a “rugged individualist.” The non-interference ideal does not imply a desire to be socially isolated. Quite the contrary. It is, rather, an orientation to desired relationships in which “sociability” is desired but without assertiveness or aggressiveness.

3. Most specifically, the doctrine of Original Sin, and its implications for human nature, is entirely foreign to Cherokee thinking.

I mostly left that first (#2) observation in, as it relates to how representative the folks who want to be in a position to say who can or cannot even get married, may or may not be. But, I made some other observations on the “without assertiveness” assumption (and non-interference in general) not that long ago, at the very end. That was where the “Strange Exotic Culture” in question referred to umbrella Appalachian culture. But, yeah, there’s not always much distinction for some of us.

I did like how Thomas worked around that at the beginning of this paper. But, he was also approaching it more from the inside.

For instance, you will note that I used the term “offense” rather than “aggression” which has psychological ramifications. “Offense,” to my mind, can be used purely in terms of behavior and ideals without getting into the inner man…But what is “giving offense” in Cherokee terms? It is any situation in which the autonomy of the individual is interfere with. These situations, behavior-wise, would range from areas of over-zealous joking or unsolicited advice to open hostility.

That would seem to cover it a lot better, with fewer assumptions built in, than “aggression”/“assertiveness”.

But, indeed, that good old “low tolerance for paternalistic or prescriptive behavior patterns” (*snerk*) applies very much to how some people insist on using their religious ideas on the people around them. And hierarchical setups with that. The assorted Pentecostals and other fundamentalist types may have some ideas that are goofy as fuck in my estimation, but they are at least fairly egalitarian and don’t go around bugging other people that much.

They’re also thankfully AFAICT still much more popular among the folks back home who feel a need to ride in the rigging of the church, so to speak, than the way more interfering Evangelical movement. I really don’t have much exposure to the more authoritarian approaches there, and continue to be surprised at what some people get up to with that. And think they’re doing right with it 😐 Some very different base assumptions, yes.

And I never really got some of the ideas that other people continue to hurt themselves with pushed at me.

I really don’t give a rat’s ass what other people are thinking, as long as they’re behaving decently and not harming anyone else. Their beliefs are none of my business; their actions are a different matter. As Thomas put it elsewhere:

Even the whites I knew in those days who were sympathetic had a basic misunderstanding of our religion. They were always asking “What do the Indians believe in? Do you have one God? Do you believe in Heaven?” I didn’t know how to explain to them that these are not the important features of the old Cherokee faith; that if you took a poll of Nighthawks you would find a lot of differences in belief; and that most questions of belief are not considered important enough to talk about much. I could see that they saw all religions basically as different belief systems, outside of the person; that one chose voluntarily as one whole consistent thing; and then pledged allegiance to it.

He was coming from a family that never even surface converted, which was the Nighthawks reference there. But, people seem to have mostly carried that basic approach over into their own versions of Christianity. I have also found it confusing when people will speak in the “belief”-heavy terms he mentions.

There’s more rambling along similar lines on this blog. My thinking there has unsurprisingly continued to develop, but the 2012 posts in that tag are still mostly relevant. I also keep finding more words to wrap around the same basic ideas.

Soon up: More rambling to tie this in to what got me going in the first place! Our old friend scrupulosity.

I had a hard time figuring out where to work this in, responding to the first set of Thomas’ observations that I quoted at way more length than I had ever intended. But, as an indication, I personally had no clue that anybody meant anything different by “sin” until after I was in college and read more comparative religions stuff. And it still hurts my brain, on most levels. Missionaries got really frustrated trying to get their ideas about sin across in the Eastern Woodlands in general, and I’m not sure how much of it ever sunk in, in a lot of cases. I was amazed to find out what most of Christianity means by that, if it’s not basically “harmful behavior”. Not even kidding here.

I also wasn’t really aware that monotheism was a thing distinct from some flavor(s) of pan(en)theism. Neither are/were most of my relatives, AFAICT, including the atheists. Frankly, learning more helped me figure out that monotheistic religions were not necessarily my cup of tea. I just couldn’t ignore that “whole different idea of the nature of man and the universe” package, and just keep on going thinking I was basically Christian by default. Sometimes things would probably be easier if that had worked for me.

But, to try to work back around to the point I started out with? My own personal scrupulosity bullshit did indeed have some very different religious/moral foundations to grab onto. And pretty much all of what it did seize on in the Make A Good Person Kit was stuff about not hurting or disappointing other people.

Some of my relatives went the same ways with it, and can get pretty terrible at themselves too. Which is better in a way than driving the people around them bonkers with it, but also…that kinda works against the whole “[h]armonious relations are the norm–the minimum” theme. When that’s already not the situation inside your own head, going into other situations and interacting with other people/the world around you in general. Your own state of mind matters there too. It’s easy to forget that sometimes.

There is also this, quoting again from the original paper:

This system gives very little tangible reward to the individual for being a “good Cherokee.” Harmonious relations are the norm–the minimum–rather than some goal to be reached. And violations of this ethic are punished by the above sanctions which, though diffuse, are severe to one raised to be sensitive to others. To achieve rewards in this system one must be a “super Cherokee” in all of these respects–almost an unobtainable goal for the average human being. And the rewards are once again very diffuse–being held in esteem by other Cherokees. One almost has to be a Christ-like figure to be held “beloved” by the Cherokees.

He got pretty scathing there, as someone who was raised that way too. But, I can’t say it’s wrong. Not a lot of cookies handed out, and it can be hard to tell when you’re doing it right. People aren’t actively avoiding you, or you don’t think they are? Maybe you’re doing it right. Maybe. Can you really know, though? You probably need to try harder.

That ’“pragmatic,” “rational,” seeking-after-knowledge view of life’ can also turn not so beneficial if you’re already prone to overthinking certain things. In an unbalanced way.

And, that stuff is about as easy to get twisted around as the Don’t Hurt/Disappoint God stuff a lot of other people have been exposed to through more “pure” versions of certain monotheistic theological approaches.

Especially if you’re dealing with some people who have an investment in thinking you’re causing problems which are really not on you. That can mess with your head, especially if you are already prone to scrupulosity.

Another instance of how this basic philosophy works in all aspects of life is that Cherokees look around to find out what persons involved in a bad situation caused the bad situation. As I said in a paper before, if you believe that your good fortune depends on your harmonious relations with other people, then you find the person who caused your bad luck.

Another exaggerated version, but yeah. That kind of approach can work out in a balanced way that’s good for everyone involved. Or, it really really can NOT. Depending on what the people involved are bringing into the situation. Very much like what I had to say recently about multigenerational/extended family living situations. Closely related subjects, yes. (Ha.)

Like with about anything else, this whole philosophical bundle can get used in various ways. Some of them more helpful than others.

But, in any case? There are some significant differences in base assumptions about How Things Work and How To Human, depending on the culture you’re looking at.

And, when it comes to how mental health issues are liable to look and best be managed in a person’s life? That really, really matters. A lot. If you don’t take those factors into account, you’re just not going to understand anything too well. And you may do way more harm than good.

On partners

June 23, 2013

Army Dancing -Le Tigre – Deceptacon

Which mostly started running through my head because of the title, but “let me hear you depoliticize my rhyme”. 😉 Plus, these guys are priceless. I can’t help but wish the military spent more time dancing, and less on what they’re getting such a huge chunk of the budget to do.

I’d thought about trying to write something on this topic before, but these related pieces from The Guardian were a good prompt:

Comment of the week: problems with the word ‘partner’

And the one it’s drawn from, which I hadn’t seen previously: When I mention my ‘partner’, what do you assume? 

I persistently get sucked into reading comments on sites like this even though I’m so often sorry I did, and I wish I were surprised at the number suggesting that the unprofessional behavior of the creepy bank employee Bella Qvist mentions must have been totally OK. But, on to the main point: using the term “partner”.

Even though I’m legally married to a person of what most people assume to be the appropriate gender, I often choose to refer to him as my partner. There are a number of reasons for this, and I’ll list a few off the top of my head:

  • When this comes up, the gender and/or marital status of either one of us is generally nobody else’s legitimate business. If it’s actually relevant, that can be clarified.
  • I don’t personally consider our relationship to be heavily based on gender. My partner must not to any great extent, either, since my “coming out” as nonbinary-probably-agender didn’t  faze him at all: same person, regardless of labels applied.
  • All of the other choices readily available in English are chock full of gendering, and by default misgender anybody with a nonbinary gender or none at all. Being called “wife” or talking about my “husband” makes me uncomfortable. They also carry an awful lot of other social baggage that I just don’t want to associate with (more on that coming up).
  • Ditto for the built-in heterocentric assumptions. Do not need. I may be a presumed woman married to a presumed man, but that does not automatically mean anyone in the relationship is heterosexual. My partner is cis and het–as far as he can be without caring that much about how I identify–but nobody else can magically know about that by looking at either one of us. Even if it were their business, in the first place.
  • I am not using the term to be misleading, no matter what someone else assumes based on my use of it.
  • In some settings, I prefer not to rub other people’s noses in the fact that I am legally married, while they still can’t have recognized marriages to their partners. For some people, the lack of legal equality is an understandably sore point, and it would be just plain rude to keep reminding them of it in conversation.

That’s probably not even all the reasons, but it will do for now.

This is a draft I mothballed for a couple of weeks, because I wasn’t sure where to go with it. But, something I read earlier helped prompt me to work on it again.

The major reason I prefer to think of my marriage as a partnership–besides usually referring to it that way, dealing with other people–is that I want to live in a more equal partnership than most of the versions of “marriage” on offer. It’s that simple.

From one exchange in comments on Clarissa’s My Feminist Journey, Part II:

So gender in Slavic countries is less, “women are fragile objects that need to be cared for by capable men”, and more, “men are immature children, and women just have to shut up and tolerate their bullshit”?

Revolutions, civil wars, genocide, world war, more genocide – men suffered more and died in greater numbers than women. This distribution of gender roles is a result. Men are a precious commodity that has to be fought over and protected. But they are a commodity nonetheless. Commodities don’t deserve respect or being treated like people.

You may notice that neither model offered there is exactly balanced, or fair to anyone involved.

Now, I did not grow up expecting to have to put up with a lot of the kinds of specific examples of lousy behavior she mentions in the post, but yeah: “As a little girl, I always listened in on the stories adult women shared. The leitmotif of those stories was the perennial need to put up with things.” It’s also been at least 150 years since men were disproportionately targeted where I grew up, but I hadn’t even thought of that as a possible factor in some social dynamics developing as they have. Interesting to think about, at least.

Then there is this, from My Feminist Journey, Part I:

This was when my fate as a woman who would never consider sacrificing herself was sealed. Unfortunately, the majority of other grandmothers forgot to hold similar conversations with their daughters. The generations of women who came of age in the twenties and the forties, who survived the Civil War, the World War, Stalin, starvation and genocide, who destroyed traditional gender roles and never looked back, forgot to mention to their daughters that strength and resilience had to be accompanied with self-respect.

As a result, they brought up a generation of women who thought that since they were strong, it was only logical for them to sacrifice themselves for their weak and helpless children and men.

The historical reasons and some dynamics there may have been very different in the Ukraine, but hells to the yeah. I also suspect that things may have skewed more this way in my own culture, with the constant influence of patriarchal BS getting pushed for centuries. Traditional roles may have changed, but in some different directions from different starting points. :/

My mother had a pretty serious martyr complex going, in general, and she was (thankfully less-than-usually) raised in a way that made her feel like she needed to put up with two emotionally abusive husbands who just did not pull their own weight in a lot of ways. I grew up thinking that was a normal state of affairs.

I still have to horselaugh at the idea that some kind of organized “misandry” is a major social problem. But, my mom honestly had very low expectations and opinions of men in general, and I grew up hearing that working yourself into the freaking ground was just what women needed to do. I have no idea how she developed that idea, since that was definitely not the way things worked in their house. But, my grandfather got an out on being basically a large, obstructive, useless pet mostly on the basis that he was raised almost entirely by women, so learned to do better. 😐 I guess she needed to keep telling herself that pessimistic stuff, in order to continue putting up with some of the behavior she did out of her own spouses.

So, on a personal level, I really do not want more encouragement to live like that, and feel somehow compelled to martyr myself in a relationship. That was one of the big reasons why I didn’t want to get legally married in the first place, besides having lived through a really horrible divorce as the child/pawn. That would be besides not accepting that the state has any business deciding whose relationships are somehow legitimate. And, yeah, my mother’s response to my saying that I never planned to get married was the bad kind of fatalism: it’s basically inescapable, one of these days. She may have been right with that, since I did end up following the path of least resistance and getting legally married to a man for immigration purposes. But, that does not mean that I have to live in the same kind of relationship she was basically trying to doom every AFAB person to. (There’s not much more charitable way to put it, honestly.)

But, it’s not just her; I wish it were. She may have been presenting a particularly unappealing version of endless work and self-sacrifice, but I have heard too many other older women talking about their husbands like they were annoying giant toddlers who couldn’t really be expected to do any better. And, indeed, apparently gaining some benefit from their own roles in that.

To quote Violet Socks again, from an old comment on her blog;

It’s also my culture, so I know it. (In its original locale, I might add.) And it’s a functional matriarchy in many ways. My own family is a matriarchy. That’s just how life is. Women are strong and smart and they hold everything together. They’re wise and practical and reliable and they just get shit done.

Yeah. I’m coming from, AFAICT, a more explicitly Native subset of the same culture, and that maybe makes it even more so.

(I was trying to find another thing from Gyasi Ross that I could have sworn was on his old WordPress blog, but ran across this more recent one instead: Mother’s Day, Superwoman Complex, and Getting Better: Loving Native People Better, v. 2. Again, the dynamics are a little different in Blackfoot country, but some of it sounds way too familiar.)

And that’s all well and good, as long as it stays somewhat balanced. And it doesn’t turn into a situation where you’ve got someone in the family getting shit done, so nobody else has to take responsibility for much of anything. I have met too many people raised with those kinds of dynamics, and I have run like hell from more than one who obviously expected me to take over running their lives (usually in cooperation with Mama). I have had one guy’s grandma try to recruit me to take over caring for him and managing the rather extensive  farming operations he was set to inherit, in a classic kind of “ensure social welfare for someone who is just not up to that, through trying to get him married to Superwoman who can do it for him”. Just, no. Even if I had liked him in that way, and it wouldn’t have been a total freaking disaster to put me in charge of that kind of thing as bad as I am with finances, no. In a way it’s flattering in retrospect to have gotten picked as a successor, but I am sorry she spent most of her own life like that.

I do not need to live with–and feel responsible for–someone who acts like a giant bearded preschooler who expects to be taken care of and coddled while I run myself into the ground, any more than I need to live in the kind of “complimentarian” relationship pushed by some religious groups. (*barf*) You may be credited with more agency and autonomy and get more lip service paid to respect in the first case, but yeah. That is still no way to live. And some version of these kinds of roles are what I have come to associate with “marriage”, per se. There are certainly other ways to do it, but I have no clue how, in a “when roles have you” kind of way.

Honestly, I don’t know that it’s not just time to trash the whole institution and start over with something not as ruined by your pick of prescriptive BS roles and expectations.

What I do want is a partnership with someone who acts like a responsible adult. Things may not always work out as I’d like, on the ground–and I still have to stay aware and try not to fall into acting like my mother by default–but that is the goal. Thinking of it as a partnership helps with that.

Every0ne’s mileage will obviously vary there.

 

Cognitive problems, and treating yourself decently

May 29, 2013

I’m working on a couple of other posts, but here’s something that’s actually very relevant to a lot of things lately, which I just posted elsewhere. (Not least, why I haven’t been able to write very much lately.)

AND I AM REMINDED AGAIN TO TRY TO TREAT MYSELF AT LEAST AS WELL AS I WOULD A TOTAL STRANGER.

Reblogging two things just now having to do with seizures reminded me again that a lot of the “Cannot brain today” fog I’ve been experiencing is most likely an aftereffect of when I was regularly having multiple seizures a day, several years ago. (I thought it might be temporal lobe epilepsy, but it seems to have been coming totally from fucked-up electrolytes from celiac deficiencies.) I hadn’t even thought of this in a while, probably because of the damned brain fog and frustration! *facepalm*

One of the best descriptions I’ve seen, in an epilepsy context: Brain Fog. A couple of years ago, it was to this level:

From the brain fog link, I ended up trying the Online Cognitive Screening Test from University of Florida, out of curiosity, the other night. The results were both encouraging and, erm, really not. On one hand, yeah, I’m not just imagining that the brain fog is a significant problem; OTOH, scoring 1st-3rd percentile “very low” on an assessment intended for people with Alzheimer’s when you’re tired is more than a little demoralizing. 😦 Not that verbal memory and task switching are my strong points at the best of times; I’ve been hesitant to retry it when just “normally” fatigued. But, again on the brighter side, maybe I’m not coping so badly (and/or Not Trying Hard Enough) after all. *wry smile*

Not surprisingly, that also helped bring to my attention just how much crap I’d internalized about the value so often placed on being able to demonstrate certain kinds of “intelligence”. Erm, yeah, not so important—and not at all to your basic worth as a person. That even applies to me. Usually I don’t feel like I have that much extra to prove because of the “but you’re so smart!” expectations and autistic unevenness in abilities anymore, but sometimes it still sneaks up to bite.

The fog has improved some since then, but it’s still a major problem, with pain making it worse.

That hasn’t happened at all for (I think) at least a year and a half now—with no bitten insides of the mouth or other signs of night seizures either—but every seizure does damage.

And kicking yourself over the Cannot Brain really doesn’t help. I’ve been in a similar place before from intracranial swelling, and it probably will improve to some extent with time and patience. Even if it doesn’t, getting impatient with yourself over things you cannot control doesn’t help at all. Perfectionism sucks, even when you have only learned to apply it to yourself.

_____________
A couple of useful links:

Coping With Mild Traumatic Brain Injury

Traumatic Brain Injury Survival Guide

As the “intracranial swelling” link above suggests, I ran into enough “there’s nothing wrong, and you should just feel lucky to be alive!” denialism before that I only found out more about this stuff as an adult, and still haven’t been able to talk about it much because I was made to feel so ashamed of even admitting that I might possibly have some cognitive problems from it. If you know someone who has experienced some kind of injury–even if it wasn’t the spectacularly obvious skull-cracking kind, and even if you can’t see many of the problems they’re experiencing with their own brain (which nobody else can)–PLEASE do not act that way toward them. It’s about the least helpful thing you could possibly do, it can make people feel horrible about themselves, and it’s likely to reduce their ability to cope when they’re already having a rough time. And they might end up needing to write stuff like this a couple of decades later, yeah.

If you think they should feel terrible about having cognitive problems and other symptoms from a brain injury, you should just stay the hell away from them, and pretty much everyone else who is not that awful–until or unless you fix your own problems there.

 

“…no excuse for poor NHS care”: looking at systemic problems

May 18, 2013

A related pair of links. I can’t help but feel like I’m sounding like a broken record lately, but too much of my life lately has been revolving around dealing with the aftermath of this kind of stuff.

Ignorance about sickle cell disease is no excuse for poor NHS care

“Sarah Mulenga’s death from a sickle cell crisis was a needless tragedy. Emergency staff must treat sufferers with respect”

This week an inquest into the death of Sarah Mulenga ruled that failures to follow basic procedures by London Ambulance staff contributed to her death two years ago. The two trainee paramedics called to attend to Sarah’s sickle-cell crisis in January 2011 failed to carry out a basic set of observations, treated her rudely and refused to take her to hospital because she had soiled herself. Another ambulance had to be called 45 minutes later, by which time her condition had deteriorated; she later died in hospital.

This was an extreme and tragic case. But many sickle cell anaemia patients have felt a similar lack of emergency care within the NHS…

Often emergency staff do not have basic knowledge of the disease. But ignorance about sickle cell disease is not an excuse for NHS staff to fail patients. “The NHS has a duty to deliver the same quality and standard of care regardless of how uncommon or unknown a patient’s disease,” says John James, chief executive of the Sickle Cell Society.

Speedy response and urgent treatment, most often with painkillers, is critical in a sickle crisis. Severe crises can lead to major organ failure of heart, lungs, kidneys and liver. Even in hospitals that have detailed procedures for chronic patients, these are often ignored by A&E doctors hesitant to give high levels of painkillers.

“The problem for emergency staff is that they can’t get their head round the level of painkillers you need to control the crises,” says 41-year-old Delroy Efemini, a sufferer. In 2005 he attended his local hospital A&E in crisis. A known patient there, he was subjected to hours of waiting and only given over-the-counter painkillers. In excruciating pain he took a cab to another hospital but staff at the first hospital called through and told them to refuse him treatment. He was then forced to return to the first hospital and was finally admitted having spent over 12 hours without any pain relief. “Going to hospital is a gamble for sickle patients”, says Efemini. “All the time you’re just praying that the nurse or doctor who knows you is on duty, otherwise you’re screwed.”

Another patient I know was, in severe crisis, refused oxygen, pain relief and fluids nine times.

Later that day she suffered a pulmonary embolism and went into cardiac arrest. She almost died in intensive care.

“If this disease purely affected white people, this simply would not be the case,” says John James. He believes that stereotypes surrounding black people and drugs lead to patients being treated suspiciously and their requests for pain relief ignored. “The first thing they think when you ask for controlled opiates is that you’re a druggie”, says Efemini.

I hadn’t even had reason to think about it before, but I’m not at all surprised that it’s a much rarer problem in the UK, even with a decent amount of relatively recent immigration from the Caribbean and assorted African countries. As someone pointed out in comments there, with the major concentration of Black immigration being in and around London, they have even less excuse for treating people here badly out of ignorance.

Even coming from a part of Virginia with a much lower percentage of Black people in the population than in the regions which used to have slavery-based economies, there seems to be much more awareness that sickle cell is a thing. I know a couple of people back home who have it–and probably more who just haven’t had reason to mention it. I wouldn’t be surprised if people in crisis often still get lousy care, but they’re less likely to act like you can’t even possibly know what you’re talking about, and must be just making up a disorder, when you’re having a crisis. And the people in the ER have probably seen it before, multiple times, even if they then decide anyway that you’re some kind of drug-seeking fraud.

I don’t have any personal experience with sickle cell, but it sounds like flat-out torture, either way.

It’s appalling, and I am sure that racism plays a big part there, especially in its continuing to be viewed as some exotic condition that’s so vanishingly rare you don’t even need to learn anything about it. Though, I honestly have no reasonable expectation of any better quality of care for something like that. The lack of respect is the big thing, in general, and the differential respect based on racism and other xenophobia ain’t going to help.

Which leads us to this one, with commentary previously shared on Tumblr. I also expect that xenophobia is part of the problem here, too, with the amount of anti-Eastern European immigrant sentiment going. I think I’ve gotten some different treatment at times, even being an apparently middle-class, usually light-skinned native speaker of a colonial version of English (and thus about as “acceptable” as immigrants get). There’s also the “pushy American” stereotype to deal with, when I’ve really had more problems with being assertive for self-protection. But, all of that’s a complication on top of the main problems with the system.

NHS: POLES, PARACETAMOL AND THE MYTH OF HEALTH TOURISM ›

The language barrier is usually raised first, when people are asked why they’d go private, but I think that’s out of politeness. Certainly Alicja, 25, who paid £60 to see a dermatologist in Tooting for her eczema, sounded less than plausible when she explained: “I wasn’t sure that I would be able to understand a GP. Medical language can be quite specific.” (her English was perfect).

The dermatologist elaborated: “I wouldn’t want to make a generalisation, but where language isn’t a problem, there is sometimes disappointment. GPs don’t refer people to specialists. There must be a reason for that, and I guess it’s economical.”

Piotr Miklewski, a 29-year-old practice manager from PMC in Ealing, said: “There is this stereotype that the UK prescribes paracetamol for everything.”

Wiki, 29, who broke her rib ice-skating, said: “And they don’t x-ray you. In Poland, you would always be x-rayed for a broken rib in case it was endangering your lung”. She added, “The doctor told me to take a paracetamol”…

Personally speaking, I would never knock the NHS for its paracetamol name, the reputation it has for never referring anybody, never prescribing antibiotics, never scanning anyone and trying not to waste x-rays. It makes us sound thrifty and stoic.

But if we think people are travelling here to make the most of our health service, we’re dreaming.

This is the kind of thing I’m talking about, when I talk about managed care on steroids.

Yes, I’m another foreign ingrate daring to criticise the way the system works. Theoretical universal access to health care is an excellent thing, and everybody should have that; that definitely doesn’t mean there’s no room for improving how the system actually works on the ground. [I also forgot to add that I was, indeed, very glad to have ready free access to health care as soon as I entered the UK on a fiancée visa. That doesn’t mean this motivated me to come, even from a country that’s renowned for spotty, extremely unequal access to the most expensive healthcare in the world.]

I can personally back up the hesitation to refer or order diagnostic testing, to the point that it reminded me of being uninsured in the US, when suddenly you don’t need all the expensive tests. (There is some happy medium there.) I didn’t get sent for any nutrient status testing or bone scans, or referred to a gastroenterologist—as is standard practice elsewhere—after the celiac not-quite-diagnosis. He also didn’t send me for all the usual tests to diagnose that. Nobody even suggested supplements. Some complications, like fractures and hypocalcemia seizures and lots of misery from severe deficiencies, may have been avoidable if that had happened. That particularly lazy, pennywise GP fouled it up in the records so that I also can’t get low-cost gluten-free food on prescription, which I didn’t think was an accident at the time. And still don’t. That one also wouldn’t refer me to a dermatologist over something I was concerned might be skin cancer. (Good thing it seems not to have been.) The next one left me on the cheapest first-line drug for type 2 diabetes, even though I had constant diarrhea and other nasty side effects for almost a year (until I just went off it myself, and stopped going there), and that malabsorption really crashed my health on top of the celiac.

Our local hospital is bottom of the barrel, with very poor CQC ratings and abysmal patient satisfaction ratings, especially for the A&E/ER department. They’re actually being sued by a bunch of people for human rights violations now. I can believe all of that. The only trip I’ve made there for a knee injury that had me throwing up from pain, my partner and I had to repeatedly insist that they x-ray it (yes, my kneecap was indeed cracked)—then sat for a couple more hours, with the dry heaves over a no doubt germy trash can my partner had to grab for me to barf into, before they came back and sent me away. With no pain relief at any point (on Christmas Eve, so I couldn’t even buy the paracetamol/Tylenol) and my ankle wrapped up. It was a good thing I already had a cane, because nobody gave me any crutches or anything, with a cracked kneecap and that leg giving out with much weight on it. I was happy to get out of the place by then, anyway. I couldn’t make this shit up if I tried. The total farcical absurdity is rather funny in retrospect—almost the comic epitome of bad ER care—but not at all at the time. And that was with someone else there advocating for me.

[And I could go on with the personal examples, but chose not to bore people unnecessarily.]

But, the thing is, similar experiences have turned stereotypical among people who aren’t as used to that kind of thing, when pretty much every hospital in England is rated better than ours. Some systemic problems there, yeah. And it’s a decent bit of the reason I’ve been having to avoid medical care. I just don’t trust them to place priority on my wellbeing over cost-cutting, even more with the austerity funding cuts [and galloping attempts at privatizing everything now going on].

If I weren’t really concerned about language issues (when communication is already hard when I’m sick or in pain), I’d honestly be tempted to try a Polish clinic. [There are also Swedish dentists and probably medical clinics, with no concerns about language barriers there beyond the disability-related ones. I actually had to get tickled at a couple of ads for dentists in some Swedish Chamber of Commerce publication Mr. U was getting, with not so subtle “looking for the quality of care you expect?” messages.] I’ve seriously considered trying to find a private GP, anyway; good thing we can just about afford it, even though AFAICT that would also mean paying for prescriptions which are technically free under the NHS because diabetes.
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When I was uninsured or on Medicaid, I was previously used to getting treated with more respect than has been usual under the NHS. (Never mind when I had good insurance coverage through both parents.) And I still had some pretty bad experiences in the US system. Part of the problem, IME, is that under the HMO-on-steroids setup, there is much less incentive to treat people with respect. Where else are they going to go, if you treat them like crap? People also seem more used to putting up with those good old “paternalistic or prescriptive behavior patterns”# which particularly rub me the wrong way. Those too often include acting like you can’t possibly know anything about your own body, as illustrated by the sickle cell bullshit.

I try not to criticise the system too much in front of British people, because that does come across as rude and ungrateful. (Similar goes for the weather. 😉 )  I even hesitate to write about it much, not wanting to come across like some kind of jerk. But, I do get tired of hearing all the “Thank goodness for the NHS!”, even in cases where the treatment would not be covered. (Yes, I did have to comment on that one.) I imagine that some of them will be in for surprises when they need treatment for anything more complicated than a sore throat.

In some cases, it seems to be a weird chauvinistic symbol; look at the bizarre Olympic opening ceremony dance thing. I can’t help but think that some of the points in Fred Clark’s , also apply here, with the “ultimate goodness” and the whole house of cards falling down if you admit that any part of what they’re doing sucks.

I don’t hear the rah-rah stuff so much from people who do regularly need to deal with the system as it exists. That’s a big difference with the rah-rah approach: I will readily admit that the way the system in the US works for the vast majority of people is totally busted, and the people resisting real reforms to make it more accessible and generally less crappy should be ashamed of themselves for aiding and abetting the harm being done by a busted system. Which is unlikely to happen, yeah.  Real reform, or their being ashamed, for that matter. 😦

I’m pretty sure that there isn’t a health care system anywhere in the world that couldn’t stand some kind of improvement.

The NHS is a very good idea in theory, but in practice things just don’t always work out so well. And too many people don’t even want to look at how the system could be improved–which is far from a unique situation, and maybe more frustrating because of that.

Quick hit: “Chronic Fatigue Syndrome and Celiac Disease”

May 15, 2013

First, a rather important post, as shared yesterday on G+Chronic Fatigue Syndrome and Celiac Disease » 

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis…

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

Similar goes if you are experiencing symptoms like these, and it’s getting treated as “all in your head”. (As mine were for better than a decade.) All the counseling and antidepressants in the world aren’t going to “fix” nutritional deficiencies, nor actual#CFS .

I got diagnosed with #fibromyalgia in college, with some added bone pain and neuromuscular problems from chronic deficiencies on top of what this blogger mentions; this is not unusual among people with undiagnosed #celiac . Neither is totally inadequate treatment once you do get diagnosed with either non-celiac thing, sad to say.

I’m actually still having some problems with this stuff, but that’s after about 30 years of malabsorption before figuring out what was going on. (A major reason I haven’t been around much lately.) Just knowing what’s happening makes things feel a lot less hopeless, besides equipping you to actually deal with the base problem.

ETA: I forgot to add that I have to suspect that something like this is going on in the majority of cases where people end up with syndromal diagnoses of exclusion. They usually test for a few things perceived to be relatively common problems, then stop there out of frustration. There’s something going on there that they could do a lot better at treating, if they actually found out what it was. Which is definitely not to say that CFS and fibromyalgia are not “serious”, in and of themselves. Rather the reverse.

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I would also like to add this, now that I have tracked down the post (source article linked there):

Besides the frustrating antivax theme hurting people, I can’t help but hope that this bit filters into the diagnostic trenches:

“Adolescent girls are the group most often affected by chronic fatigue syndrome”

It’s enough of a problem with adults, but this is maybe also the demographic most likely to have such a cluster of “vague” symptoms dismissed as a psych problem, based on bias/laziness/shedloads of assumptions which are anything but evidence-based. This can also be extremely harmful.

As I’ve written about here before, vitamin D deficiency is an appalling common and un/misdiagnosed problem, even without malabsorption complicating things. I never did get that link post done on the links between low vitamin D levels and chronic pain/fatigue, but there has been a decent bit of research there (to the point that trying to collect a good sample was kind of overwhelming). And sometimes “fibromyalgia” symptoms and back pain are the main presenting symptoms of celiac. Maybe I can put something together before too long. But, yeah, it’s only classified as a vitamin at all for historical reasons, and the vast majority of people don’t get much in their diets even if they can absorb it fine. It’s actually a hormone, which affects every system.

If a deficiency isn’t recognized and treated, that can cause you a variety of serious problems, up to and including death.

And another BBC story posted six hours ago, which I ran across looking for something on another absolutely horrible case* which did result in death:  Too much sun cream results in Leicestershire boy’s rickets:

Chris Head, from Lutterworth, always had factor 50 sunscreen on when he played outside blocking the sunlight from his skin.

His mother Suzi said she was shocked to discover her precautions had resulted in a painful condition for her son.

So much for some sources that claim rickets is not painful. (How would that even work?!) I’m sorry these things keep happening, but also glad that there’s more awareness now that guidelines on avoiding UV exposure are really horribly inappropriate in a climate where the majority of White adults (and IIRC all the non-White ones tested in that large study) are deficient.

Another study, in which “deficiency” as defined is probably “profound deficiency that will give you bone density and other severe health problems” (“< 10 microg/L”==10 ng/mL; the ranges in the above graphic are actually running on the low side by current knowledge): Vitamin D concentrations in an UK inner-city multicultural outpatient population. I just ran across that one, and couldn’t resist throwing it in. I don’t want to sound like one of the unbalanced vitamin D as panacea folks, but yeah. That really does no doubt contribute to a lot of chronic health problems and suffering, which are totally treatable if properly diagnosed.

 

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* I haven’t been able to write more about that one, but it was an absolute clusterfuck of medical malpractice and racism, resulting in the death of a baby and his (young, dark-skinned) parents getting convicted of killing him. The poor mother’s own vitamin D levels were so low, at 16, that the child was born with basically no bone minerals–and nobody believed her when she kept taking him for medical attention because something obviously wasn’t right with him failing to thrive and crying in pain all the time. (She could not have been healthy at all, herself, even before a pregnancy and nursing using so many resources.)  That article I picked barely goes into the horribleness there, but it’s easy enough to find more. Including speculations that similar keeps happening, with at least one study happening  into how many children assumed to have been beaten to death may have really died from complications of severe rickets.

OK, I am probably not going to try to write more about that in future. My eyes are starting to bug out of my head, as it is.

Reblog: What if people told European history like they told Native American history?

May 10, 2013

Couldn’t resist a quick reblog of this one, which I initally ran across on Tumblr, because it’s so spot on.

I hadn’t run across this blog before, but am definitely following it now.

Another good recent post I just read there: Recognizing Hopewell and Cultural Continuity.

An Indigenous History of North America

The first immigrants to Europe arrived thousands of years ago from central Asia. Most pre-contact Europeans lived together in small villages. Because the continent was very crowded, their lives were ruled by strict hierarchies within the family and outside it to control resources. Europe was highly multi-ethnic, and most tribes were ruled by hereditary leaders who commanded the majority “commoners.” These groups were engaged in near constant warfare.

Pre-contact Europeans wore clothing made of natural materials such as animal skin and plant and animal-based textiles. Women wore long dresses and covered their hair, and men wore tunics and leggings. Both men and women liked to wear jewelry made from precious stones and metals as a sign of status. Before contact, Europeans had very poor diets. Most people were farmers and grew wheat and vegetables and raised cows and sheep to eat. They rarely washed themselves, and had many diseases because…

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More rambling on being the “wrong shape”

May 8, 2013

I’ve been fighting a lot against getting the ED triggered lately, even though I’m actually pretty bony for me right now.

I don’t even remember what I was trying to photograph there–it looks like an accidental shot–but yeah. My collarbones don’t usually stand out that much.

 

The hypermobility/EDS skin type will apparently make your veins show through more, but this is how much subcutaneous fat is on my legs. It’s actually kind of startling these days, catching a glance at those veins.
I’m also glad that there was *not* the emphasis on “thigh gap” 25 years ago, because even having lost a lot of muscle mass too, the way I’m built my thighs still touch when I’m standing! It makes me sad how many younger people are driving themselves around the bend with just that one thing that’s totally unattainable for an awful lot of people. And that’s just one focus among many.

(That’s also how much hair I’ve got on my legs, BTW, since I stopped shaving them several years ago. First because it hurt my back to do it, then I never started again after nobody even seemed to notice the difference. My biodad had/probably still has like six chest hairs, and I obviously took after him with that too. Lots of carefully instilled insecurity about body hair, too, so that even AFAB people who don’t have much are made to feel like nasty hairy critters by default. 😦 It’s ridiculous, even for people who do have more.)

As I was telling Mr. U the other day, I think I’d do better just to try to work myself up to getting probably some insulin and meds, rather than keep trying (however gradually) to majorly restrict any macronutrient. That is just not looking so healthy for me, in a number of ways. (From my responses, I have also wondered for some time if I’ve actually got one of the “1.5” variations instead of any of the usual under the Type 2 umbrella. I did the best ever on a combo of long-acting insulin and Januvia, which stimulates insulin release, when I was back in the US.) The subtype I’ve got, and a number of my relatives have, at least seems to behave more that way. AFAICT, that can also have a celiac-related autoimmune trigger like Type 1. My mom also probably had the “gestational diabetes” that never went away, even though they weren’t even bothering to test for it back then.

At any rate, I ran across a few videos last night that both amused me and made me feel a bit better about being totally “wrong-shaped”. I may not see it every day anymore (which is, indeed, part of the problem), but I’m far from alone in the kind of “wrongness”.

 

Cherokee Stick Ball

As mentioned in the next video, the game also got used in past to settle disputes instead of actual fighting. And it wasn’t all men doing it.

 

Cherokee Stick ball

I found this one hilarious not just because they seemed to be doing more half-assed wrestling around* than actually running around after the ball (and whacking each other with the sticks, of course)–but because even the couple of guys who opted for belts couldn’t keep their britches up to save their lives. 🙂 I don’t think they were even going “Hey, Burly Dude, you should play stickball!”; there are just an awful lot of people with that basic build. Like, erm, most of my family.

Another thing that stood out here, which has driven me crazy most of my life now? Our bellies just don’t do flat. Not only because if you have an ounce of fat on your body, that’s where it’s going, but even if it’s all muscle it ends up looking like the six-pack is turned around the wrong way. My uncle just about choked to death laughing when I pointed that out to one of his kids, who has gotten into weight lifting and was expressing some displeasure with his abs a few years back; they’ll only stick out more if you build them up. My uncle was also always made to feel bad about being built that way and encouraged to diet, with the eating disorders running along with the OCD in my grandmother’s family of people built like that (often over 6 feet, too, so they weigh a lot). My grandmother put herself in the hospital one time with it**, and placed a lot of pressure on the rest of us. No matter how much I starved myself when I was younger, my stomach always stuck out. That may have something to do with having a rib cage that comes down so relatively low. (Also a definite limit to how small your waist is capable of getting!) Even though I realize now that there is nothing inherently wrong with that, it is still so far off the current ideal and “wrong”.

That was all guys. Don’t their sisters magically have  a totally different basic type of physique? Not so much, because it makes no freaking sense. Humans are not that dimorphic.

 

Cherokee Indian Dance – Cherokee Village-NC

 

But, yeah, those are good reminders that there is something wrong with the idea that somehow whole groups of people (and their individual members) can be inherently “wrong-shaped”. That may be far from the current ideal of what anyone is “supposed” to look like, but that says more about the unattainable ideals getting pushed (often for profit) than anything else. And I keep repeating similar things not just for my own sake, but in hopes that it might help someone else who is getting crushed by the ideals to get a little different perspective. But, yeah, it does help to keep reminding myself, too.

This stuff can even be a problem for people who are built to a smaller scale overall, as I was reminded by a post that honestly made me cry, and that I hadn’t figured out a good opportunity to work in before:  Weight Loss Conundrum

Like most females, I grew up with an extremely distorted body image. Three of the biggest reasons for this is simple genetics. Because I’m of mixed Tsalagi (Cherokee) heritage, I have physical traits that differed substantially from my friends who aren’t. One of the big ones is my rib cage is completely round and larger than most. It’s always been this way. I have very narrow shoulders, but mondo ribs and a very short waistline (my bottom rib basically sits directly on top of my hipbone).

If that wasn’t bad enough, I’m extremely chesty. By age 12, I was a B cup. By 16 an F which I remain to this day. Believe me, I’m not bragging by any means. I’m extremely self conscious about it and part of the reason I started wearing corsets was to minimize them. The one thing people never talk about is when you’re large on top, you always look three to four times heavier than other women. People assume you’re always heavier, too, and they pick on you a lot when you’re a little kid and young woman. I’ve been asked by fans why I don’t write bustier heroines and this is why. It’s been such an issue for me over the years, that I don’t want to deal with it on paper, too (I’m too busy dealing with other issues I have :). In college, my measurements were 38-23-32. Now you know why I used to wrap my torso with an Ace bandage before I ran or did any physical activity. Sports bras really don’t work for larger sizes.

My next issue that I inherited from my family is that I walk on my tiptoes and always have. This resulted in making my calves larger than most (and given me shortened Achilles tendons). Jeans and boots have never fit that part of my body well, not even when I was a size 0. The benefit is I can bench press about 300 pounds with my legs and I have muscles on them that a weightlifter would envy, but they are legs only a weightlifter would envy 🙂

Which gets me to the last issue, I carry a lot, and I mean a lot, of muscle weight and always have. My entire life, I have been extremely active as my very skinny yet muscled brother can attest to (I can walk/run him under the table). My mother used to say that touching my legs and arms was like touching granite. Because of all the stuff I do, even at my heaviest I have never jiggled or had an ounce of cellulite anywhere on my body. Yet all of the above is a recipe for shoot-my-lard-butt-cause-I-think-I’m-bigger-than-a-house self image that plagues me to this day.

When I wore a size 0 and no that’s not a typo, I weighed in at a staggering 135-140 pounds (I’m 5′ 2″ in height). According to all medical and BMI reports, I should weigh 108-121 (my mother was 5′ 5″ and weighed 110 yet she wore a size 10 while I was in a 0). Now you would think that my common sense would have kicked in and I’d have been okay with my weight when I wore a 0 in jeans, right? Nope.

TL;DR: She developed problems with actually putting on more weight from restricting food way too much, because physiological responses to food insecurity. My own bare skeleton wouldn’t fit in clothing sizes anywhere near that small–a 12 is the smallest I have managed on the bottom at anywhere near adult size, while actively starving myself. I wear a 34-36″ waist in men’s jeans now, and don’t think I could wear much if any smaller now even if I did starve myself some more. I definitely can’t fit into smaller than an 18 or 20 on top, because ribs plus Rack of Doom. (OTOH, I would never wear a bra if people didn’t act like jerks about it, especially when you wear upward of a D cup.) People always also underestimate my weight visually, then get shocked when they see the numbers, even when I was fat.

But, that’s how “wrong” having a barrel chest and some muscle mass are if you’re up against the “ideal” expectations for women these days. The emphasis on numbers over actual health does a lot of harm to a lot of people.

I am still stating some numbers here, for a better idea of what I’m talking about. Not attaching moral value to them, nor trying to obsess over them.

As I mentioned earlier, it also doesn’t help that where I’m living now, I very rarely see anyone built even remotely like me. And that’s with the diversity of Greater London. (We do live in the least diverse borough, however, which skews old, relatively wealthy, and very White British.) I’m not even that big back home, but bigger than an awful lot of men I see on the street here. My actual ribcage is a full 10″ bigger–about a third bigger–than the average British woman’s, besides being taller.  I really do stand out, to some extent. That isn’t necessarily good for someone who has some skewed “shoot-my-lard-butt-cause-I-think-I’m-bigger-than-a-house” body image problems going, to begin with. (Yes, I’m a buttless wonder, but “lard ass” is so ingrained a slur that I’ve gotten to hear it a lot anyway.)

I also think that this is probably turned into more of a problem for people read as women. (Other than being one reason I have gotten “sirred” on multiple occasions, but more on that at some later point.) The expectations are that different. I do know of one case where a male acquaintance, who is a Highland Scot (maybe there are more people built similarly there), got diagnosed with Type 2 diabetes and his doctor immediately started going on about his BMI and how he would be killing himself if he didn’t immediately lose huge amounts of weight. The guy is built like an obviously muscular fireplug. His wife had to get rather aggressive, insisting that he be sent for body composition analysis before they treated weight loss as The Cure. Sure enough, he had like 5% body fat, and that actually shut the doctor up. But, that is one of the few cases I know of where the wider range of “allowed” body types didn’t work out better for a man who was visibly not fat. (Getting treated that way when you really are fat is not any better. But, people can usually tell the difference better between a muscular, stocky man without much fat, and one who does have more fat. Women who are not willowy are viewed as fat by default.) It’s not just medical professionals–though that can turn into a pretty bad problem–it’s also the general public.

Another factor I hadn’t thought of so explicitly, for that extra touch of “bull in a china shop” feeling, brought up in a comment from Carol Chambers, on THE SPACE WE NEED at Fat Heffalump:

HOWEVER, I can completely relate to the consciousness about how much space my body is taking up, especially when weaving through restaurant tables, having to let the seatbelt out all the way on a plane, etc. The worst is sitting on the ground with the kids while my daughter’s class sings to us while other parents sit in the tiny kiddie chairs. (I finally tested one out–tentatively–but even though it didn’t break, I’m always conscious of how much of my bottom is extending from either side.) How much space I’m taking up has been almost a subconscious voice in my head for as long as I can remember. This worry has even shaped the way I gesticulate and move my body (not very freely).

I have lived in the UK and the limited amount of space available was astonishing to me as a naive 24-year-old. I have perceived a difference between the crowded Northeastern states and southern ones, especially Texas, when it comes to space as well. I would be interested to know empirically how much cultural factors from country to country or even state to state within the US actually make a difference with fat-shaming, and how much the availability of space affects people’s attitudes. If that is not in the recommended book, I’d like to read about it somewhere.

Yeah. I keep having to try to fold my shoulders in, and try not to knock things over, because things are just that much more cramped here than I’m used to encountering. I doubt this helps, and I am now wondering about ” how much the availability of space affects people’s attitudes”. Most of the overt fat-shaming (actually fat or not) I have run into has been in medical settings, but staring and funny looks have been more common. It’s hard to tell exactly why, most of the time, but yeah. I’m definitely not imagining it.

I have to say that Stockholm didn’t feel nearly as crowded, and I didn’t feel particularly conspicuously outsized when visiting.  No idea if/how those things might be related. The personal space differences probably helped, too:

SWEDISH RULES (It wouldn’t let me embed the video starting at 2:00 for that part, but I had to laugh at the whole thing anyway.)

The Swedish version is closer to what I’m used to, in most circumstances.

On the whole, it’s probably a good thing that I ended up marrying someone who is bigger than I am, in an almost stereotypical Burly Viking kind of way. (And who also doesn’t care about my weight, unless I lose an unhealthy amount from being sick or something.)

My mom used to say that she felt horribly self-conscious, living with my biodad who was/is like 5’7″ and naturally very skinny to the point that he kept getting advised to gain weight (though also proportioned with big shoulders, etc.)–but, I think that came more from his using her existing insecurities as a weapon in the emotional abuse. He was afraid to try to hit her again after the first time she broke a stoneware mixing bowl over his head, because that was what was at hand. But yeah, that just made him sneakier with the abusive behavior. So he not-so-subtly kept bashing her over the head with her weight. I am glad to report that I have, indeed, turned into as big a fat bitch as my mother, as predicted when I was eight or nine. I really don’t want to live with someone like that, but it might still bring out my insecurities more just living with someone who makes me feel hulking. (Probably her, too, but plenty more was going on there.) I have found that I do feel more comfortable around more bearish men.

To put it more explicitly: this kind of emotional abuse with people’s size used as a bludgeon is way too common at a societal level, and is part of the bigger abuse and bullying culture.

 

Amon Amarth – The Pursuit Of Vikings (Summer Breeze Fest.) Beware the timing fail at about 2:45 that set my teeth on edge. 😉

Another reason I had to get tickled at videos from Amon Amarth is that Johan Hegg, the singer, is almost a ringer for Mr. U. From what I’ve seen, that is not an unusual basic type in Sweden, but it’s still kind of funny. Mr. U actually has longer (and greyer) hair now, and his arms and shoulders are bigger (mostly because he has to work out some to keep his shoulders from dislocating!), but the resemblance is striking. They even have the same slightly funky beard growth pattern. It’s more amusing because Mr. U is about as likely to go “Odin!” metal as to grow another half a foot or so to match Hegg’s height. (About 6’8″, IIRC.) He prefers Kate Bush and Enya, and is very geeky in a good if very non-metal way. The incongruity there is pretty obviously funnier if you know him. 🙂

Also, male or no, I’d hate to think of the cognitive dissonance the weight of either one of them would cause in some of the British doctors I’ve seen. As it is, Mr. U has repeatedly half-joked about taking a cheap flight back to Sweden to buy trousers and socks that actually fit, because he’s harder to fit here than I am. (He does buy both every time he goes to the US for work, or with me.) It’s even harder than it should be to find something in a long enough inseam and big enough waist in the “big and tall” shops he’s looked in; apparently, you can be bigger around than average or tall–and, yeah, he just looks a “normal” size by my standards. A 42-34 shouldn’t be that rare a size. Finding an Orvis branch in London did help, for cargo pants, etc. See also: The UK: clothing utopia for smallish fat women, though that does apparently work out a lot better for that blogger’s build:

Let me tell you, most British clothes are cut more generously in the hips and chest than North American clothes. Women with pear and hourglass shapes, take note. They also seem to be proportioned for shorter women. I’m 5′-4″ or 5′-5″, and I never wear petites in the UK. I wear “mediums” or “shorts.” Yes, they have four inseams on most women’s trousers: tall, medium, short and petite. The petites are actually made for women who are around 5′ tall, not for women who are really medium height, like me.

I fall within the size range she’s talking about , even now. As an inverted triangle, I just mostly have to buy men’s pants, which is the same old for me. Unlike Mr. U, finding a long enough inseam isn’t a problem for me, being close to average British male height! (I need around a 29, while Mr. Long Legs needs preferably a 34.) It works out pretty well for tops, though, and in some brands I can even buy a large to fit through the chest. Shoulders are trickier, overall, but that was also true buying clothes in the US.

And, to close, here’s an exchange I had to laugh at last night, which looks so very, very wrong out of context:

Him: Eat salad. Me: :P

Him: Eat salad. Me: 😛

 

The context, which is actually very dull: I bought some bagged salad, and then decided we didn’t need it with the rest of last night’s supper. Since he was heading off on another business trip today, I hoped I would remember to eat it myself before it went bad. His answer: offer to send me reminders, then actually do it for the lulz. 🙂

Now that I think about it, I will really close with a link to a post I ran across yesterday: Why I Don’t Diet – An Ode to My Father | More Cabaret

My father was born larger than life, to a family of larger than life people. DNA sequencing showed we are almost entirely Viking stock, no great surprise given the height and breadth of our bodies…

His last night in hospice, I sat by him in his room, his head resting on my shoulder. He was so small. His formerly massive legs had wasted to small sticks – like a child’s legs attached to a man’s body. He was a shadow of himself.

Nurses came and told me they wanted to resettle him in bed. He was partially supported by my body, and they were afraid I wasn’t strong enough to hold him. They were afraid he would fall. They brought four orderlies to help reposition him. Four strangers to move him since he was so big.

I told them no, that would not be necessary. I leaned over and gently lifted him off the bed, repositioning him so that now I cradled him, his entire weight supported by my body. I am more than strong enough, I informed them.

My father spent his years fighting his size, wishing he was smaller, weaker, less of a giant. He was taught to hate his body, and he was ashamed of the amount of space he took up. But he passed his strength to me, and I won’t squander my inheritance. I will not let myself be diminished.

I am my father’s daughter. I too am a giant, built of strength and flesh. And I am strong enough to carry myself and others, even when they can’t carry themselves.

That one brought back some memories. *sigh* The home hospice team actually called in some burly guy who (amusingly) turned out to be one of her cousins to stay with my mom while we ran errands, in case somebody needed to pick her up out of the floor or something. The difference: nobody else doubted my abilities there, and I did break.

And I hope to be able to feel that way inside, all the way down, one of these days.

 

_____________

* That was apparently an exhibition match in an unusually small space–and as the announcer was pointing out, every town has a different style. That was a team from Big Cove, plus one Choctaw guy. (Who blended right in.) I only watched about half the video, so I don’t know what they were doing later. I’ve still never seen a stickball game that looked quite like that before. 😉 Granted, nobody has played it where I grew up since at least my grandparents’ generation–my Papaw apparently used to as a kid–but yeah.

** And, at last check, would still insist that it was the best she’d ever looked in her life, though she felt awful. Yep. Her mother, who lived off two tablespoons of leftovers per meal*** and Ex-Lax, actually pretended she didn’t know my five-year-old uncle (her grandson) at some kind of gathering, because she was so embarrassed by his size. Not a good situation at all, no.

*** Yes, she would apparently regularly cook a big meal for everyone else, then eat a few bites of leftovers herself. Pretty classic, and very sad. She also died young, and I doubt the chronic severe malnutrition helped her body resist the cancer.

Wétiko, Jamestown styley (vs. New England)

May 2, 2013

And another thing that inevitably came up in response to the first post:

STARVING SETTLERS IN JAMESTOWN COLONY RESORTED TO CANNIBALISM ›

freedominwickedness:

nezua:

clatterbane:

This might be the first specimen that provides evidence for cannibalism, but Owsley is pretty sure there are more to come. Percy’s letter also describes how, as president of the colony, he tortured and burned alive a man who had confessed to killing, salting and eating his pregnant wife—so the remains of this woman, along with other victims of cannibalism, may…

MORE

[nezua:]

one day, when enough truth is unearthed in all the right yards, more people will understand why the statement “[May] God shed his grace on thee” is a threat, and why that threat is the US anthem.
[freedominwickedness:]

Keep in mind that the Pilgrims were religious fanatics from the get-go. The reason they were being “persecuted” in England was they were pretty much trying to start a civil war so they could replace the Church of England as the state church, and they were doing THAT because they believed the CoE was too moderate. They came to America for the specific purpose of forming a church-state theocracy in which there would be zero tolerance of beliefs other than their own.

(The formatting there got fouled up at some point in reblogging, so I put attributions back in and stuck most of the OP behind a cut.)

Good point, in New England. Virginia was a whole other kettle of fish, starting out totally from a profit motive. (Public-private partnership, no less.) Lebensraum and a place to send prisoners and other undesirables away from the tiny little British Isles came later, but none of it was particularly religiously motivated further south. Beyond the usual Doctrine of Discovery excuse for trying to grab other people’s stuff. They wanted money and other resources however they could get them, and mostly didn’t even bother to try to look like they wanted to “save souls”. It was more like the Anglo-Carribean colonies that way. There were actually pretty close ties between the Chesapeake and the “British” Caribbean.

I’m actually pretty glad that the weirdo separatist Puritans got blown off course and ended up in Massachusetts instead of in the already existing Virginia colony where they were trying to go, though. (If not so glad for the people who did end up with them…) Purer greed is maybe easier to deal with in some ways than the kind of “Pilgrim” theocratic approach that assumes you’re the freaking Antichrist. (Seriously. Native people partly embodied the Antichrist.)

That’s another problem with the commonly presented founding myth: the slave-based cash cropping economy was already beginning in Virginia by the time any “Pilgrims” made it across the Atlantic. Beyond the “religious freedom” idea that gets pushed there as part of the national mythology, which really had way too much in common with the kind of theocratic nightmare some evangelicals want now in the US. As you point out. 🙂

ETA more about some history the official mythology erases:

In 1619, one year before the Mayflower landed, about 20 Africans traveling aboard a Spanish ship were captured by a privateer, either a  Dutch ship or an English ship flying a  Dutch flag. When the pirates ran out of food they stopped at Pt. Comfort, now Ft. Monroe (“Freedom’s Fort”) in Hampton, Virginia, then sailed up what is now the James River. The pirates sold the Africans into indentured servitude to Jamestown’s Governor Yeardley, who supplied them with food and water.

Knowing that he was acting against regulations forbidding trafficking with pirates, Yeardley hid the Africans away on his tobacco plantation across the Chickahominy River at Weyanoke, a few miles from where the Weyanoke Indians lived in what is now Charles City County, Virginia. “Weyanoke,” in the Algonquin-related language of the Weyanokes, meant “sassafras,” and referred to a tree commonly found in the area. The root of the sassafras tree was (and still is) used to make a deliciously aromatic tea with medicinal properties. Sassafras was the Jamestown settlers’ first cash crop, and was marketed in Europe as a cure-all.

Thus was formed, at Weyanoke, the first African community in an English-speaking colony in North America. While these were not the first Africans in the colony, they are the first now known to have lived together in a community.

I can totally understand why some people would rather erase that kind of history. But, it’s kind of late now to act embarrassed, rather than try to learn from horrible fuckery that people got up to 400 years ago. And try to do better in the future.

_________

Going to add explicitly: neocolonialism and neoliberal policies don’t really pass for doing better.

Also, I get tired of hearing the oversimplification of “America’s Puritan heritage” used to explain any number of trends. (This seems very popular in the UK, where you’d really have to be a historian to keep all the colonial history straight…) At least as important to understanding what is still going on in the world is the heritage of unbridled exploitative greed. Not to mention the variety of other religious influences you get from stocking some colonies with an astounding assortment of nutballs you want to get rid of, but yeah.

Greed is crucial there. It’s also harder for the rest of the world to separate itself from than some weirdos trying to set up their own “New Israel” on the Massachusetts coast.

Wétiko, Jamestown styley

May 2, 2013

If You Don’t Like the Effects, Don’t Produce the Cause. (Lyrics.)

Another quickie, originally from Tumblr (which is about my level of concentration lately).  Another example of how things are unlikely to end well for our societies if we go for willful ignorance rather than learning from history:

STARVING SETTLERS IN JAMESTOWN COLONY RESORTED TO CANNIBALISM ›

This might be the first specimen that provides evidence for cannibalism, but Owsley is pretty sure there are more to come. Percy’s letter also describes how, as president of the colony, he tortured and burned alive a man who had confessed to killing, salting and eating his pregnant wife—so the remains of this woman, along with other victims of cannibalism, may still be waiting to be found underground. “It’s fairly convincing, now that we see this one, that this wasn’t the only case,” he says. “There are other examples mentioned here and there in the literature. So the only question is: Where are the rest of the bodies?”

This is one thing that really gets me about this BIG NEWS. It’s not like there aren’t a number of primary source accounts that this happened. Along with them just murdering each other when times got really tough, which was also treated as BIG NEWS several years back when they turned up remains with musket balls stuck in their bones.

There was also amazement at around the same time, at further evidence that people got shot for “defecting” to live in Native towns, where there were things like food and women—and, erm, a certain lack of forced labor. Also plenty of primary source evidence for this. They were all indentured to the Virginia Company starting out, besides the gentlemen investors, and could be killed for running off. See also how torturing and burning people alive was considered a fit punishment for crimes.

See also: Jamestown Settlers Were Cannibals and More Reasons the Colony Was Hell

It really is amazing they ever succeeded.

Another factor that got left out: as fairly densely populated as the Virginia coast was then, one of the major reasons nobody was living on that bit already was that there was no potable water available. Jamestown was taking its water straight out of a brackish river that gets bacterial blooms in hot weather (which there is plenty of there). Not very good survival planning, overall.

Also consistently omitted: the “Starving Time” was such a big problem, largely because they’d pissed off the locals so badly that they stopped giving them food. They had to be taught how to hunt and fish, and farming was a much lower priority than looking for gold. (Yes, the people who were supposedly attacking them nonstop for no reason tried to teach them how to get their own food. And kept taking in runaways.) They started a colony with no farmers:

The food from the Indians was critical to keeping the colony alive. No farming implements have been found at the archeological site – they relied on the Indians for food in those early years.

ETA: I didn’t say explicitly, but this power structure also meant that the indentured commoners couldn’t just say, “Sod this, I’m going to try to grow some food instead of  looking for gold that isn’t there.” /ETA

That “more reasons the colony was hell” article was not too surprising in ignoring that there were actual reasons the locals weren’t happy with those particular colonists. Act belligerent, and then expect you to keep giving them all their food in a severe drought? Ha.

To put it simply: this is the way they were behaving amongst themselves, not even toward people they were viewing as “heathen savages” and a potential source of slave labor as part of the colony’s business plan. Yeah.

Also, another disturbing thing, hinted at by the “more reasons the colony was hell” piece?

It Was Originally All Men

Three shiploads of men docked at Chesapeake Bay on April 26, 1607. Three weeks later, they had settled Jamestown, an unused bit of land the Native Americans had deemed undesirable. The next year, two brave women set foot in the colony, but then it took another 13 years for a crop of young unmarried or widowed women to arrive.

So, this starving bunch of squabbling colonists decided to eat a teenage girl, and apparently also the pregnant woman in that first quote. There were almost no British women (I’d guess Percy would have mentioned if the pregnant woman had been Native), so these fine specimens of humanity killed and ate more than one. I wouldn’t place good chances on the survival of anyone else some of these folks thought they could overpower, either.

Wétiko, anyone?!

I guess what gets me the most, overall, is the total public amazement that meets every bit of further evidence that these weren’t nice people, overall, and the society that produced them was just plain brutal in some ways. Colonial ventures do not begin in “nice” societies, and do not tend to attract “nice” people.

That is so contrary to the noble motives propaganda that still gets taught as history (maybe especially in Virginia), unless you dig some and start reading things from the people who were there. That presumed glory and grandeur pretty quickly falls flat, once you actually look past the propaganda. A lot of it’s not even “good” or really plausible propaganda, but people want to believe it.

ETA: More about the mythology, which inevitably came up elsewhere:  Wétiko, Jamestown styley (vs. New England)

Trying to get some help

April 29, 2013

I had to split this off into a separate post, going more personal than the last docsplaining one. (And then stuck it in the mothballs for several days, because uncomfortably personal.) Which may have sounded a bit harsh, but sometimes that is appropriate.

All that said, my own situation has become untenable, and I have been agonizing (ha!) about trying to find another GP and hopefully some kind of help which is actually helpful. I’ve been thinking about it for a good while now, and am still pretty well stumped as to how to make sure I get treated with some dignity and respect, while dealing with hearing/c0mmunication problems and PTSD reactions that make effective self-advocacy difficult. Mr. U is also buffaloed by health care situations, and even though I have explained to him what kind of help I think I need in order not to get bulldozed, it feels unfair to him–and I’m not totally sure he can handle doing interpretation and advocacy in a situation that also freaks him out.

My own brain fog and easily getting overloaded, from the health problems I need help with, also make speaking up for myself much more difficult. (A persistent problem when I’m sick or in pain, yeah.)

But, yeah. My coping skills are running on fumes, and my health situation is looking unlikely to improve on its own.

I’m trying to ease into eating fewer carbs, to try to manage my blood sugar without getting seriously triggered by food restriction, but that’s needing to go pretty slowly. (Probably more on that coming.) Some other appropriate treatment to get my glucose levels running lower would no doubt help me feel better overall. I’m afraid they’ll just try to put me right back on the metformin that had me barely able to go out of the house and with more malabsorption problems someone with celiac doesn’t need, because it’s the cheap first-line option. (It also didn’t lower my glucose levels, just made me very sick for the whole almost a year before I finally went off it on my own, and helped crash my health from the malabsorption.) But, maybe I can find someone who will listen better than the last “diabetes guy” GP who kept brushing off some really bad side effects and wouldn’t try me on anything else because it’s a “good drug”. Apparently making anyone who doesn’t do well on it a bad patient, yeah, and that’s not the first time I’ve run into that; my mom actually wound up in the hospital with signs of  kidney and liver failure over a couple of “good drugs” like that.

The thing that’s been hardest to deal with lately, though, is the broken sacrum. Yep, that is still a problem. It will partly heal up, then it will get reinjured and displaced in some way, but the pain is always there and makes it hard to even think straight. The relentlessness is maybe the worst part. I am just about at the end of my rope, after the last “it had several months to partly heal, then I started cramping through the hormones intended to prevent that, and it felt like a fresh fracture again!” episode. There’s always something, but it’s somehow more frustrating when your body starts ganging up on itself.

Unfortunately, sacral insufficiency fractures are often an unsuspected and undiagnosed cause of low back pain in elderly women. It was not until 1982 that they were described by a physician named Lourie.

Symptoms can include severe pain in the buttock, back, hip, groin, and/or pelvis. If the pubic ramus has fractured, there may be pain in the front of the pelvis. Walking is typically slow and painful. It can be difficult to do other necessary activities. Your back or pelvis maybe tender to touch. You may find that you have limited range of motion of your low back…

Sacroplasty may be considered in those with a severe decrease in functional ability and quality of life. It may provide faster relief of pain than typical conservative care.#

(Bolding added.) That is certainly one way of putting it. There is no comfortable position, and basically nothing you can do without disturbing a broken pelvis (including lying in bed). I have been having trouble with doing much, and hurting myself trying to do it anyway, within a seriously decreased activity level. I’ve been having trouble with things as “simple” as showering as often as I would like to, much less simple things like standing up and cooking, or going grocery shopping. (You can forget relaxing walks, much less bike rides, which is a serious quality of life problem for me and also doesn’t do much for glucose control.)  The pain itself screws with my glucose control. Luckily, my fracture does not seem to have caused any nerve impingement or damage, but it still ain’t comfy, and I am also having more trouble getting out because so many resources are taken up dealing with the pain that I get more easily overloaded.

What kind of pain are we talking about, when they consider sacroplasty?

Median activity pain scores collected from 13 patients decreased from 10 (IQR 8.5–10) pre-procedure to 6 (IQR 4–6.8) post-procedure (p<0.0001), and median rest pain scores collected from 29 patients decreased from 7 (IQR 4–8.5) to 2 (IQR 1–3.5)(p<0.0001). #

_

We identified six patients (five women and one man) with a mean age of 83.2 years. All six patients presented with low back pain and four also had buttock pain. The interval from pain onset to diagnosis ranged from 1 month to 1 year. All patients reported that pain onset followed a fall. The mean VAS pain score was 8.2 before sacroplasty and decreased by 7.6 points 24 hours after the procedure (with four patients having a score of 0). #

_

METHOD AND MATERIALS
We retrospectively reviewed 63 patients treated with sacroplasty at our institution between 2004 and 2011. An 11-point numerical rating scale (NRS) pain score was recorded at rest and at activity both pre-procedure and post-procedure. The patient’s pre-procedural and post-procedural pain medication were quantified into the Medication Quantification Scale Version III (MQS III).
RESULTS
Mean post-procedure follow up was 3.46 weeks (st. dev.= 2.87). Mean pain at rest diminished from 6.3 pre-procedure to 2.79 (p <.0001). Mean pain with activity diminished from 9.2 to 5.23 (p <.0002). 82.2% of patients experienced a numerical or descriptive decrease of their back pain (n=49). #

Other than the last one, I think those were different 10-point pain scales. So, yeah, not inconsiderable pain levels, with quite a relief upon getting the bone stabilized. I wouldn’t even try to rate my own pain levels from this on a numerical scale–since I consistently minimize the numbers–but this does provide some validation that yes, it really hurts. Moderate pain is the the best that it gets, and “at activity” in this context can mean just gimping around your own house. Yet I still keep questioning whether I’m making a big deal out of nothing, and just looking for an excuse to be lazy and, erm, have severe brain fog and not be able to do most of the things I enjoy, and stuff like that. Because having trouble concentrating on reading in larger chunks is so fun for someone who’s hyperlexic, and so on.

To repeat, there is nothing you can do that makes it not hurt. It hurts a bit less with rest, or with narcotics (if you have access to them) to dull it a bit so that you can actually do basic stuff (or, erm, sleep) with less misery, but it always hurts.

And that’s before you throw in anything else, like dental problems or other injuries. That’s not a linear increase, either.

BTW, I am not that surprised that they were so late considering that sacral insufficiency fractures might even be a thing, much less that there might be some way of treating them beyond bedrest. (Which, as that first info sheet points out, is a really bad thing for elderly people in particular; on top of everything else, “[d]isuse osteoporosis is a serious risk”!) From what I understand, the enforced inactivity like that is also a major reason a hip fracture is such a dangerous thing for older people. The sacral insufficiency fractures are something that mainly affect older people, the vast majority of whom are women, and osteoporotic fractures in general still get misdiagnosed and not taken seriously. They don’t show up on x-rays well, and tend to cause a lot of muscle spasms to try to stabilize the fracture; they often see the spasms, and stop there.* Hell, they only recently started trying to cement up vertebral fractures (“Overall, 25% of women over the age of 65 years and 40% of women over the age of 80 years have a vertebral compression fracture.”) And a lot of those also hurt like hell, about like you’d expect from breaking something in your actual spine. (Also try moving so that doesn’t cause more pain…)

I’ve tried the conservative treatment options short of total bedrest (no can do, besides its being dangerous and causing lots of spasms from disused muscles), but by this point am afraid it will just need to be glued back together. “My butt is stuck from shooting glue”?# 😉 I would almost try sniffing the stuff if that had any chance of working, brain cells be damned. And, beyond the joys of actually going into a hospital (not even the awful local one) and having a procedure done–with anxiety attacks just thinking about it–I do not relish trying to convince someone that I really do have a (bleedingly obvi0us, from the swelling and palpable fracture line–yes, you can feel it) broken ass, when I am not elderly or anything, and that it is just not healing with conservative treatment. And that it has indeed been very, very painful and I still have not sought treatment before this. I have no reasonable expectation that the pain would be taken seriously, even with an obvious problem which is hard to miss, and which is known to cause severe pain. Based on past experience, yes.

I don’t even dare to say that I am having repetitive looping thoughts about wanting to die, which are really about wanting to get some relief from the fucking pain.

Nobody reading this needs to get concerned about my doing anything drastic, either. This kind of thing has happened before, and it’s an annoying warning sign that some change is desperately needed to make my life feel more worth living.

Not feeling like I can talk about much of this has helped add to some depression, as well. Not too surprisingly. I don’t want to add that much more stress for Mr. U, or start into what feels like endless whining online. (I also still half-expect, “Well, then, why don’t you do X? You’re just going to have to force yourself to do X, or you have no right to complain!” :-|)

A few weeks ago, I was going back through a few blogs I have only been kinda-sorta following, to see what I’d missed. And one post gave me pause.

Yep, I may have found a therapist I can actually work with, as nervous as the idea makes me based on some other past experience. And what looks like one bus ride away, iffy as public transport can be with a broken pelvis. Physically getting there is still a concern.

Sounding pretty good so far:

Want to talk about it?

If you’re sad or in a bad way, broken-hearted, feeling hopeless, beaten down, scared and confused, haunted by the past, or down in the dumps; if you’ve got the blues, or have no one around who can listen; if it’s hit you at once or there’s been a long and slow build-up; if you feel like you can’t go on, need space to work things out, can’t handle it alone, want to know who you are, need to take care of yourself, or can’t face things; if you’re struggling to get by in a world that would rather you didn’t exist; if life is blah, if you’re struggling to feel alright, if you just want to feel better, if you have more duff days than great ones, or keep making the same mistakes, and for loads of other reasons, therapy can help.

And, a further excellent indication:

I also welcome people who might need or want a therapist who won’t make a ridiculous fuss about their particular situation. This includes but is not limited to academics, activists, anarchists, bisexual people, club kids, disabled people, feminists, gay people, geeks, goths, lesbians, people in poly relationships (or who are thinking about it), people who do BDSM, people with autism and Asperger’s, people affected by HIV/AIDS, poets, punks, queer people, sex workers, trans and gender variant people, drag queens, working class people, writers, and so on…

From what I’ve read of her blogging, she seems to have her head screwed on pretty straight anyway. Before we even get to maybe actually feeling comfortable about discussing things covered by that list, I had to think of the “small” things like being able to go to an appointment comfortably dressed, with no makeup, without getting mental health concern trolled over it. (Gee, I felt a lot better about myself before you started pathologizing my not feeling like lipstick today/gaining 10 lbs./etc…) Huge difference in approach to anything I have experienced in past. Working from the assumption that yes, there are some systemic problems you may be having trouble dealing with–and, no, you’re not “crazy” for recognizing them–is an excellent start.

One of the persistent problems I have is setting goals and planning. This is probably PTSD-related; I was also never actually encouraged to set my own goals in previous experiences of counseling/therapy, which was a pretty big problem in itself. (There were plenty of others, mostly coming from its not having been voluntary, but yeah. Both distracting and too triggering to go into right now.) But, in this case, I am thinking in terms of triage, and the thing that would probably make the biggest difference to my quality of life right now is trying to get my physical health taken care of. So, I am considering trying to get some help with getting to the point of being able to try for some medical care again.

Another thing that might help there, if possible, is some practical suggestions for navigating the system. I think one of the problems with access I’ve run into is pretty simple: I’m a doctor-avoiding foreigner, living with another foreigner who has sought medical care once in the over a decade he’s been living in the UK. (His elbow must really have been hurting that time…) Things might be different if I had in-laws used to dealing with the NHS, or closer offline friends to ask about stuff, but yeah. I don’t have a great idea of how the system works, other than on paper, much less how to use that to my benefit. I had the knowledge to do that a little better back in the US, but also had a lot more help. (Even if it wasn’t always the kind of help I wanted. Ah well.)

But, just having someone else to bounce this stuff off of–who is hopefully not assuming that the entire problem consists of me and my unsavory weirdness–might be helpful. Not just with this, but definitely dealing with both trying to come up with some other coping strategies and dealing with some of the obstacles keeping me from getting basic health care. I still haven’t gotten in touch, but I am seriously considering it. And I’m fairly secure at this point that I’m a grown-ass adult who can just say “well, this isn’t working” and walk out, if it comes down to that. With similar applying in medical settings, yeah.

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* Personal experience there, too. The first serious bout of what in retrospect was (then undiagnosed) celiac-related bone density problems, vitamin D deficiency, and other deficiency symptoms happened in my mid-20s, aggravated by a number of factors including meds that made me photosensitive and overheat so that I had to stay out of the sun. So, no making up for not absorbing what little D I was eating. I seriously messed up my lower back (digging a grave for a cat, actually), and the orthopedist did see a couple of obvious compression fractures on the x-rays–which, to their dubious credit, they did insist on taking before putting it all off on stress. I saw those x-rays, and they did look like the ones of compression fractures I’ve seen more recently. Since I was young, apparently healthy, and so on, the response was “Gee, I wonder why that’s looking so compressed, but it’s probably not serious. Hahaha, you can’t relax those muscles at all! Here are some muscle relaxants, and you really need to work on your stress levels!” Seriously, the guy LOLed at my back being locked in spasm for, erm, a couple of months solid; no idea what he was thinking there, nor did I really care. (ETA: At that point, it had only been going on for a couple of weeks, but that seemed past time to try to find out what was wrong.) That didn’t do much for my stress levels, I tell you what. I didn’t go back there again, even though they did also give me some Darvocet instead of just the usual NSAIDs. (Yes, that was nowhere near the only back or other musculoskeletal problem I’d run into at that point, when I was “too young”.)

It got treated as mostly a mental health problem at home, too, probably aggravated by the poor cat dying. Oh, and I was taking too many pills for something no more serious than that. Only an unusual experience in that there was  something showing up on x-rays, which promptly got dismissed. And, apparently, I need to bitch about it all these years later. 😉

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