New location

I will be continuing to tweak the little things that only really matter to me, but regardless, this blog has a whole new home (that looks just like the old home!). Check it out, and give me some comments to fill up that sidebar with. :)

www.threeriversblog.com

Am I the only one?

I've seen a lot of talk recently about performance-enhancing drugs taken by generally healthy people.

And it absolutely infuriates me.

I've felt the same in the past about people taking painkillers for pleasure; it's no different with the various concentration-type drugs (ritalin, etc.) that are growing more popular with the teen and 20s set by the day.

Again, "appropriation" doesn't feel the right word. But I can't think of quite any other. When I try to dig down to the root of my feelings on this, it comes down to: I have to take this shit every day just to be able to get by, to be able to do half the shit you do and still be in a fuckload of pain. And you're seriously going to sit there and take it to get high? Or, worse, to make you perform better than you already do?

You stupid fucks, can't you just fucking appreciate what you have?

I don't know if that's entirely rational. I know there is some ableist bullshit in there (i.e. how the abled default is centered as the good and perfect with the differently-abled as deficient) but at the same time, I really, honestly think there is something problematic about it. Not necessarily inherent in the act of using these substances itself, maybe just in the lack of recognition that these people are already incredibly advantaged and privileged and they just refuse to see that.

I don't know. Does this make sense to anybody else? Do you feel the same way or am I being ridiculous? What do you think?

Thank you, Lupron

I am now about five pounds away from an overweight BMI! Oh, how things have changed.

Ever since I had my tonsils out at age six, I have been extremely picky. The shitty thing is it's not just a matter of "not liking" something -- it's a matter of involuntary gagging and heaving. And my appetite, for as long as I can remember, was inordinately small. I could eat maybe a quarter of a modest-sized meal before I was at the point where I actually could not swallow any more food, because I would start gagging once it hit my throat.

My neurologist indicated in my records that I was visibly undernourished. At the time, I was 5'8", around 115 pounds. That's a BMI of 17.5, or 1.0 past the cutoff for "underweight." And a bra size of 34notevenA. (Different brands call it different things, but the one constant is that the bra would be a bit too big for me.)

(I hated my weight, for the record. My shoulder blades hurt anytime they were pressed up against anything, even a soft bed. My hips and pelvis cried out in pain from grating up against a hard plastic chair (i.e. 2/3 of every weekday ever) or even just against a fitting pair of jeans. I always felt like my bones were ready to snap at any moment. Weak, fragile.)

Right before new year 2005 I got on the Lyrica, which has a side effect of weight gain/increased appetite. I saw both. Yay! Within six or ten months I saw my body become more and more padded. It settled down around 150. BMI 22.8. Recently re-fitted for a bra (I was still wearing my stretched-out 34As) at 36C. Took some adjusting, certainly. I had always had a bit of a roll on my upper tummy, even when I didn't have much of any fat there at all. That remains. My legs are nice and firm and muscle-y now, since I started working at a place that requires me to be standing or walking all day, but besides that I am basically composed of significantly less muscle mass than a "normal" woman, and make up for that with a bit more fatty tissue. It's how I've been whether I'm completely sedentary or whether I am active and regularly exercising.

The first of these two pictures were me around my high school graduation in 2004. The last is me as of this month (taken to earn discounts off Threadless shirts. Whee!). There's a significant difference.

I've grown to be mostly happy with my body. The fact that I have extra tummy fat -- or just that my breasts are fairly small proportionately, which has the effect of making my tummy seem bigger in my mind -- is really the only thing that gets to me sometimes; besides that, for the most part, I'm certainly comfortable walking around nekkid all day, and I can admire even the unconventional things -- like the multiple scars on my back and my side, my silly slightly-crooked nose (the Hungarian in me) and my wide, full hips and butt. I like those.

Those are fuller now, though; I weighed in at 158 at the doctor's office yesterday, and I am sure over the course of this six-month treatment I will see a little bit more gain (it is only just today one full month since my first shot).

I should get used to this, right? Of course, people only gain, bit by bit, as they get older -- and it's usually better for them to do so, in terms of health and mortality. And I do plan on going through pregnancy at least once in my life. And for as much fucking medication I'm on, I can't expect not to see some weight gain. Really, which would I rather have: another five pounds around the hips and tummy?, or debilitating neuralgia, crushing anxiety, or endometrial implants growing and spreading and scarring up my insides, creating an awful amount of pain and frustration?

And culturally, which do women often choose? Not every time, but enough times that clinical trials do often see patients dropping out early for the side effects, the most common of which in medication for women is weight gain.

This is a lot for me to get used to. Really, four years later, I still have an image of myself as the skinny minny. I still expect people to recoil when they hug me because they're afraid they'll hurt me if they squeeze too hard, and remark with a concerned tone on how little I am. I still think of my breasts as exceptionally small, rather than absolutely average -- and when I think of it that way, I think that they can't be counted that way because I have more than enough tummy to make up for it. I still expect to be able to fit into Mediums and Smalls on the dress rack...

I know I am measuring against a fictional standard. But God it's just all over, and I can't escape it. It's woven down around every thread of thought that has anything, anything at all to do with outward appearance, even in the most indirect way. And I know that even if I can somehow purge myself of it, clear my own head, it's still permeated throughout our culture in an even worse way. I can't escape it -- I can never escape it.

I try, little bit by little bit, to be positive about my body around other people, and to be positive to them about their bodies, and to remind them that it's better to live a happy, healthy life in the body you've got than to stomp all over your health and happiness to change your body. But that doesn't mean I, myself, am unafflicted, unconflicted on the matter.

I was hesitant to include this next picture with those above, because it doesn't just show me as "average" -- I immediately see that spare tire below the breasts, how it pops out over the top of my jeans so obviously, how plump my thighs are juxtaposed with those skinny little toothpick calves and arms.


But you know what? I shouldn't be tearing myself down over these things. I shouldn't.

This post was originally going to be just that first line.

I'm trying to make sense of all this. I guess none of us ever fully do, do we?

She Writes Letters

Dear (check all that apply): Upper/Middle Class, Political Geeks, Journalists, Liberals, Blogosphere:

There are less than three weeks left until the convention primary voting ends.*

Why the desparate push for Clinton to drop out? Is it going to make a difference in the next twenty days? What will her abdication accomplish?

You cry about the irreparable damage to the party. What damage is being done? I see record voter turnout -- in many cases higher turnout in the Democratic primary than the 2004 Presidential race -- record numbers in fundraising for both candidates; incredible enthusiasm on the part of supporters for both candidates; an actual sense of purpose and direction in the party as a whole, and an actual backbone!

We are accomplishing so many things. Our Democratic leaders are actually pushing forth an agenda that means something to the people of the country. And even with the albatross that is the Republican party, we are seeing actual progress and accomplishment. Over the last four and a half months, we have been arguing over matters of policy both foreign and domestic, learning from each other, and finding a voice together, boldly speaking out against the policy of the last seven years that has lead us to where we are today. And the people are hearing us!

Both candidates have run historic campaigns, the closest to the White House any woman or any person of color has ever come. People are turning out in droves to support the both of them, and the level of excitement inspires, well, hope. We are doing good things! And even the quibbles between the two only lead us forward, helping us to stake out a firm position, to strengthen the one who will lead the country to a better place.

Where is the damage to the party? Are we not accomplishing incredible things? Are not the people happier with both the two remaining Democratic candidates than they have been in decades?

In three weeks, when we decide on one leader, will we be damaged?

In just less than six months, when the people of America vote for their President -- may the best person win -- will we be damaged?

Does anyone honestly believe that one month from now, two, three, four, five, or even that sixth, that our case will be so damaged as to be irreparable, and that it will be Clinton's fault?

If our strong, true, and persuasive case for smarter public policy is rejected by the people, who will have been the one to damage it? Will it have been the left, or will it have been the right?

We have six months now to work together. Even now, in the midst of this damaging primary, both candidates are helping define their opposition -- John McCain -- as "more of the same." Even now, independent groups are leveling attacks on the presumptive Republican nominee.

And six months, in the past, has been derided as a campaign that takes too long!

We have plenty of time, my friends. Won't you let us all voice our preferences at the booth, and then join us at the convention, where we will decide together on which excellent candidate will lead us both to victory?

I will be there. I hope you will join me.

Yours,

Amanda

* Thanks hn in comments for correction.

So you know those back spasms I've (still) been having dozens of times daily? (Dozens of times hourly, often enough.) And those couple times I only barely avoided fainting, along with severe dizziness when I don't go painfully slow in getting myself up from a resting position?

Yeah, my gynecologist doesn't think they're related to the Lupron (even though I've never gone through anything like the former, and the both of them started a few days after my first shot and haven't abated since). I'm to see my PCP to try and figure out WTF is going on with my body.

Sigh.

Marital Rating Scale

My scores are my own estimates, based on how I would be perceived by others.

DEMERITS

1. Slow in coming to bed -- delays til husband is almost asleep.*
   
   Well, effectively, I suppose: I have more to do to prepare for sleep (remove contacts, gather medicine to take before bed, set up medicine and drink for morning taking, use bathroom, etc.) and he falls asleep in about as much time as a commercial break takes -- whereas I take an hour or so. This is actually a source of disappointment for me, because I love to fall asleep with him; I grow lonely when he's already snoozing and I can't keep from tossing about in pain. My score: -1.
   
   * The subtext here varies. The woman may be delaying so as to avoid being subject to sex at the end of her day. But then, she may have plenty more to do than her husband does (such as Merit #7!) or is even aware of -- setting out clothing for the children, finishing up the dishes, tidying up loose toys and such. A housewife's job is never done, and if she were to neglect these things to be in bed in a timely fashion (that is, at her husband's whim), she would surely see a demerit for it.
   
   
2. Doesn't like children. (5)*
   
   I could see being interpreted as not liking children, myself; I'm not really very good with other people's children (and I have none of my own, yet). A huge part of that in my past is simply my social anxiety. But when it comes to children I know, I'm just fine, and I know I will be with my own. And that's no different than many other women. My score: 0.
   
   * Whoo boy! I'm surprised this isn't an instant disqualification. Besides, it's no wonder a woman wouldn't like children in such times; she carries the entire responsibility for another sentient being, over whom she will not be able to exert absolute control no matter what she does -- who wants to be on the line like that?
   
   
3. Fails to sew on buttons or darn socks regularly.*
   
   Well, shoot! Regularly? Matt asked me the other day if I could fix a hole in his jacket pocket, and I told him that basically, I can sew a straight line for a couple inches, and that's about it. And it won't be pretty either, so it's a good thing it's inside a pocket! Buttons are the easiest thing in the world, tho'. My score: 0.
   
   * I suppose the deconstruction here is quite easy; she needs to keep herself busy with womanly things, making sure that no sign of humanity is ever to be seen on her husband or children -- it would reflect poorly on her. So soon as one stitch comes loose, it is to be mended.
   
   
4. Wears soiled or ragged dresses and aprons around the house.*
   
   He's lucky if I wear anything around the house. When I do, it's usually a comfortable chemise, which protects my sensitive breasts from any light contact (which is excruciating to me), hides the "naughty" bits, allows freedom of movement, and doesn't restrict my sore shoulders or hips. Pants come off immediately when I arrive home; they're too painful to keep on. But this is simply inappropriate around children, so I'm sure I wouldn't score so well. My score: -1.
   
   * Consider everything a woman was required to do in her day, while at the same time remaining perky and pretty. For whose benefit? The words "effortless perfection" comes to mind.
   
   
5. Wears red nail polish.*
   
   Or any nail polish at all. I keep my nails short, a habit held over from my violinning days. That alone probably suffices, though. My score: -1.
   
   * Tart! Jezebel! Wicked woman! Too subversive. And hey, if she is to remain perfectly decorative every minute of every day, who says she can have her own fun with it?
   
   
6. Often late for appointments. (5)*
   
   HA! I try to leave myself a buffer of time before any "appointment" and still often arrive barely-on-time or outright late. It comes with the fibromyalgic territory, unfortunately. My score: -5.
   
   * Again, consider everything the woman has to do in her day. Is this appointment, say, church? She had to prepare every screaming, writhing child to be presentable in public in their Sunday Best and then prepare herself! But she best not inconvenience anyone, after all.
   
   
7. Seams in hose often crooked.*
   
   Hose at all? I don't wear them, except as an extra layer to keep myself warm in the winter (and not entirely willingly -- the things are a pain through and through). But I know, culturally, wearing tights is a habit fast fading, so I'm not exactly being subversive here. But there are plenty of other fashionable faux paus' to be had for the modern women: I've given up on hiding my bra straps in a tank top, even though it's coded "trashy." My score: -1.
   
   * Must appear neat and put-together at all times. Have you, the reader, especially if you are male, ever tried to wear a pair of pantyhose? Getting them on, much less with straight seams, is a quarter-hour struggle. And once they're on, there is no simple re-straightening of the seams; you have to start all over again. Some time, when no one is at home and you know you have an hour to yourself, try to put on a pair of your own, if you never have before. You will have a new appreciation for the demands women faced every day.
   
   
8. Goes to bed with curlers on her hair or much face cream.*
   
   Or goes to bed with the bed hair she woke up with that morning! I don't often fret with these things. My score: 0.
   
   * And yet she was to have beautiful curly hair and perfectly smooth and radiant skin when she awoke the next morning. Effortless...
   
   
9. Puts her cold feet on husband at night to warm them.*
   
   I laughed at this. I've done it. More recently, I've tried to warm his cold feet and been turned away, lol. My score: -1.
   
   * Shades of "frigid," anyone? This shows a lack of consideration for her husband's comfort, and also draws his attention to her comfort, which is simply unacceptable. Suffer in silence, dear.
   
   
10. Is a back seat driver.*
    
    Only slightly, although my husband might disagree. My score: 0.
    
    * Who wants to take orders from a woman? And how presumptuous of her to claim to know what is best for a man. Women should be seen, but not heard.
    
    
11. Flirts with other men at parties or in restaurants. (5)*
    
    I'm a happy, mildly social person, which under current contexts might render me "flirtatious." But I think most people would see things more fairly. And besides, how often am I ever at parties or restaurants? My score: 0.
    
    * Insouciant! Infidelity is one of the endless deadly sins for a woman in such a time. Of course, flirting may simply be a smile or a thank you, or engagement in light but fun conversation, or appearing to enjoy herself with any male person within a short distance. But, of course, a lack of these things would be a sign of a cold and inconsiderate woman, who doesn't know her place. Damned if you do, damned if you don't.
    
    
12. Is suspicious and jealous. (5)*
    
    Not so much, to my eyes anyhow. Then again, we both spend every spare minute together, so we both know most of everything the other does, which could count. My score: 0.
    
    * Again, she fails to realize her place. Who gave her the right to question her husband's actions? Doesn't she have enough to tend to without sticking her nebby nose into his affairs? His business is his alone; she has no right to it, to even know of it. But (see Merit #9) her business is subject to his notice and review, every detail, at all times.
    

TOTAL DEMERITS: -10.


MERITS

1. A good hostess -- even to unexpected guests.*
   
   Hardly! Every moment of interaction with outside persons is planned. Every time I step foot outside my home, it is planned for far in advance. Double so for a person coming into my home. It simply requires far too much preparation. I would never be able to be ready at a moment's notice for anything at all. My score: 0.
   
   * No moment to herself, always open to intrusion (which, of course, isn't considered intrusion -- she is effectively public property), always pretty, always happy, her home always neat and tidy, her children always pleasant and behaving, a warm meal always ready on the stove. She has no time available to stop being what everyone else needs her to be, and just be.
   
   
2. Has meals on time.*
   
   I don't even cook the meals around here. My score: 0.
   
   * There ought be no inconvenience to the man of the house; not only need he not be the one to prepare his meal, he need not even be aware of any preparation whatsoever. If there is any wait, he has been wronged.
   
   
3. Can carry on an interesting conversation.*
   
   Depends on who it is I'm talking to. But for the most part, yes. My score: 1.
   
   * Keep in mind this conversation shouldn't be too interesting; can't intimidate a man with any sign of intellect. Best to keep to safe topics of conversation, like children and weather and beauty (but without turning to gossip) and stay out of anything "serious" -- which is of course only things that concern men.
   
   
4. Can play a musical instrument, as piano, violin, etc.*
   
   I played violin for eight years and sat first chair until my disability began to catch up with me, at which time I quit. I could probably play on the level of a second-year violin student if I were to pick up and try right now. My violin is a treasured item, though; I'm still trying to figure out how to "display" it without seeming weird. My score: 1.
   
   * Of course, now, in addition to childrearing, housecleaning, meal preparation, and other such necessities, she need be ready at any moment to perform entertainment for others. At least this is something she could draw some enjoyment out of -- but of course, were she to wish to study an instrument and actually do something with her skill, she would likely be rebuffed and reminded of her place.
   
   
5. Dresses for breakfast.*
   
   I know that this means "dresses for the day before breakfast," but I'm going to take it literally, in which case: No. I have sat at the kitchen table to eat breakfast with my -- clothed -- husband, myself entirely disrobed. And it's not really the exception to the rule. My score: 0.
   
   * Again: must remain pretty and decorative every moment of every day. Don't subject the family to her messy hair, baggy eyes and droopy tired face -- why would they want to see such a thing?
   
   
6. Neat housekeeper -- tidy and clean.*
   
   Hardly. Again, I work half the time my husband does, and he still does at least half the housework. And the place looks it, too. My score: 0.
   
   * Be available at all hours to clean up after husband and children who can't be bothered to do it their own selves; allow no disarray. If you've never tried this, it is an exhausting job. Not to mention matters of simple entropy: dust collecting on the furniture and so on.
   
   
7. Personally puts children to bed.*
   
   My "children" know when it's bedtime, and they put themselves to "bed": Mitsy on top of my nightstand, and Buddy in the cubby hole on the bottom of it. :) My score: 0.
   
   * This is a nice touch for the children, but it's also a difficult job. It's also telling that the father is nowhere to be seen here. Can't be bothered, after all; there are more important matters to tend to.
   
   
8. Never goes to bed angry, always makes up first. (5)*
   
   I try not to go forward angry, bedtime or not: if something is wrong, I want to talk it through, so that we can understand each other better, and hopefully see resolution. But that doesn't mean I haven't had those nights myself. I do think, though, we are very good in handling any issues that come up between us. But because of what I feel this really means -- below -- I can't really give myself a positive score. My score: 0.
   
   * There are two interpretations of the latter half of that sentence: always makes up before going to bed -- or always makes up before her husband does. And honestly, the latter is probably the more accurate. The woman is expected to humbly submit to the husband, admitting her wrong, and accepting any berating to follow. Even if the husband realizes he was wrong in fact, he cannot admit as much, because it would be emasculating to cede ground to a woman. And besides, her anger is a nuisance; the more quickly she lets it go (read: buries it inside), the better.
   
   
9. Asks husband's opinions regarding important decisions and purchases.*
   
   We both do. It works for us. My score: 1.
   
   * Of course, the husband is the primary decisionmaker in the family, so to neglect to seek his counsel on a matter is to deliberately flout his authority. It's not so much a matter of trust as it is a matter of (perceived intended) insult to his rule.
   
   
10. Good sense of humor -- jolly and gay.*
    
    I do tend to be a pretty happy person; as I've said in the past, you know I am not doing well when I am in public and not smiling. This is for any number of reasons, large part of which is just my personality, but not therefore free of influence from family and society. My score: 1.
    
    * Wouldn't want to remind anyone of her humanity, after all. The woman is an object, her personhood disregarded. No matter how her day as gone, how others have treated her, what may have gone wrong, how large a burden she carries on her (slender and smooth) shoulders, she is to appear bright and pleasant. She cannot serve as a distraction. Besides, her matters are not of importance when compared to anyone else's -- it's simple insubordination to presume otherwise. As such, they are to be kept inside, so that no one can even know they exist.
    
    
11. Religious -- sends children to church or Sunday school and goes herself.*
    
    I am a religious person, but my efforts at finding a church here in my new home have been nil. Do you really think I'd be able to force myself up every Sunday morning with children? My score: 0.
    
    * Notice the father's absence here. Of course, the appearance must be maintained at the church that the family comes as a family, with the father's guidance -- but in reality, the responsibility for getting there lies with the wife. And in reality, the responsibility for maintaining that holy image lies, again, with the wife: she must be perfect herself, of course, but her children must also be -- if they are not, it is a reflection on her mothering -- and her husband must also be -- if he is not, it is because she is not pretty enough, gay enough, sexy enough, submissive enough, perfect enough. Spirituality is an incredibly gendered topic, much moreso than many realize.
    
    
12. Lets husband sleep late on Sundays and holidays.*
    
    Oh hell. He wakes me up early on weekends! (That is, before 10-11AM.) My score: 1.
    
    * Wait a second, aren't they supposed to be at church? And isn't there supposed to be hot breakfast ready the moment he wakes, and isn't she supposed to be dressed and made up for the day when he does? And shouldn't the children also be awake and readied to eat with him, as a family -- but without making enough noise to wake him early? And...
    

TOTAL MERITS: 5.

So my score so far is ... 5. Which puts me under "Very Poor (Failures)."

Sorry, honey.

via

ETA: Go see the entire list over at taryn's. My ending score is a +2. Impressive!

Proposed Moratorium, The Third

GODDAMMIT, PEOPLE.

"Psycho" is not a stand-in for "bad person."

It is used by people who want to Other a person who is behaving in an unfortunate way, predictable or not.

"Crazy" and "insane" are similar words, but the connotations of those are so generic by now as to be less harmful.

But psychotic, schizophrenic, and other actual mental illnesses should not be appropriated by right-thinking people to mean, simply, Shoot! Someone Is Being Mean To Me Again.

I mean. Just. Fuck.

Inspired by the recent prevalance of people referring to Hillary as "the psycho ex-girlfriend." Of course, this particular stereotype combines ableism with sexism to reach grand new levels of insultingness. To these people, I can only say: FUCK OFF.

This idiot

missed National Fibromyalgia Awareness Day, which coincidentally coincides with her wedding date.

I do usually scoff at "awareness" campaigns, mostly because the most visible are for causes no person isn't already aware of. But for subjects like this -- where there is a great deal of misconception -- they can be useful. The NFA's "clothespin challenge," for instance, seems small and silly, but really, it is a pretty smart technique.

Simple Answers to Stupid Questions

Errr... except the question is not stupid and the answer is not simple.

On May 8 I received a visitor via a Google search for:

is chronic illness something they label you when they can't find out why you are in pain?

Well. Yes. And no.

No, because often they understand why you are in pain (for a rather simple, surface meaning of "why": that is, you have a diagnosis, even if they don't know shit about why your body does what it does): you have arthritis, or neuralgia, or back pain, or a really fucked up ankle, or whatever. And the best way to describe that, really, is chronic pain. (Chronic illness, etc.) Because it's pain that isn't going to just go away -- which needs distinction, because the latter is how pain is thought of culturally in the US. It's something you're going to be living with, if not for the rest of your life, then for a long while yet. And it requires a somewhat different approach.

But yes, in a sense, because doctors do love to punt. It is a rare doctor who does their job when it comes to the difficult patients, and patients who present with symptoms for which there seems to be no cause are hard to deal with, both because of the obvious, and because they are, honestly, just a general pain in the ass. They hurt and they need help, but you don't know why they hurt and so you can't really treat them effectively, and because the treatments are at least initially ineffective they keep coming back to try to fix it, and you don't have the faintest clue where you should go next.

This is not to say that doctors -- and other medical professionals, from the nurses to the receptionists to the therapists to the recordkeepers and the billers -- are therefore bad people. Most of them are doing the best job they can. Most of them have at least half a conscience. Most of them are trying to make as many lives as better as possible.

But good intentions do not erase bad results (as is so commonly thought). A lot of doctors are really behind in the research on most chronic pain conditions. A lot of doctors believe pretty backwards things about chronic pain patients (I'll give you two words that sum it all up: faking it). A lot of doctors are too busy managing other things to really connect the dots properly. A lot of doctors drop the ball in referring a patient to someone who can take care of them properly if they know that they cannot (and simply offering any ol' referral to get them out of your hair does not count). A lot of doctors fail to follow through, period.

And their patients suffer for it. Understandable or not.

The medical world is a busy, busy world. There's a lot going on at any one time and no one person can carry the entire burden. Sometimes, mistakes are made, because the people doing the work are human.

But sometimes, it doesn't matter why. Because someone is suffering as a result.

And someone had damn well better pick up that ball and set it rolling again, history be damned.

To patients who don't know what to do, where to go, who to see, because nothing seems to go right: Keep trying. Keep faith. It's not all in your head. You aren't imagining it. If one professional fails to diagnose or treat your condition to a point where you get better, then find another. Because that professional is not doing hir job.

And you deserve one who does.

It's exhausting sometimes. But keep moving forward.

"Dogs get better care in the dog pound"

Too exhausted to comment, or even to finish the remaining 2/3 of the article. It is devastating.

I will just repeat: Immigration is a human rights issue.

Are Immigration Authorities Going After School Children?

I wouldn't be fucking surprised.

God damn them. I grew up with these children. My late elementary school years were spent in a school way out in county land, attended mostly by the children of the immigrants at Linell Camp, who worked the fields day to night -- I was one of two white students in my grade. What the fuck did they do wrong? They came to school and they worked their hardest and I can say, having graduated with several of them, that they damn well made something of themselves by your standards. Their parents worked much harder than most of us ever will, and they lived in homes the size of my closet on a fenced-in campground, surviving on anemic wages. And they lived in fucking fear because of actions like this.

Immigration is not an economic issue. It is a human rights issue.

I remember the posters.

I grew up in central California, a heavily agricultural area, an area heavily populated by Latin@s. It has been a bit of a shock for me, as I moved on to other areas, that cities and towns would run into one another with nothing in between: in the central San Joaquin Valley, there was county land, with dense residential areas called towns, and it was usually a 10-15 minute drive through county land -- corn fields, grape fields, all varied sorts of orchards -- to reach the next town.

I did always wonder: where was your address, if your home was in that county land? And if something happened to you while you were there, who would come to your aid?

I remember the posters. I would see them posted on bulletin boards in grocery stores, fast food restaurants, secondary schools, county buildings. They were low quality copies, asking for my help, asking: have I seen this girl?

Almost always a girl. And there were other common features -- the eyes, the thick dark hair -- the shaded skin. And the name. Veronica. Consuelo. Yolanda. Maricela.

Nobody ever seemed to pay attention to these posters.

And I remember the signs on the highway, when we would drive down to Los Angeles to visit my doctor, or when Mom was being shunted around various hospitals for reasons I was too young to remember. They were the electronic types, set up over the road, the sort that would warn you of gusty winds on the Grapevine. They flashed messages of missing children. And I seem to remember different names in those messages.

And I remember the rationalizations. These low-class girls, in low-class families. Must be runaways. Won't be missed. What's another one? Turn your eyes, and in another few seconds all will be forgotten.

This is a systemic problem, with dirty roots reaching deep. From the casual observer to the detective whose job it is to do these searches, nobody seems to care. Nobody who matters, anyway.

Good God

I am far, far behind in my reading, but Matt was reading the news aggregator after we got home from dinner tonight, and my eyes caught a glimpse of the words "immigration raid" -- oh no -- in Iowa.

The AP has a brief sum. Cold comfort, that last line.

It does give me hope, at least, that some people saw it coming, and arranged a workshop for immigrants on their constitutional rights -- regardless of legal status. Not that it will change the system that is incarcerating them, the system that separates family members, that treats people like useless old dogs. But it will make people aware of the rights they are said to have, and maybe, maybe it will help save some.

Immigration may not be the issue that some exploitative politicians hoped it would be for whites in this country -- but make no mistake: Awful, evil things are happening in your name. Not only in Guantanamo Bay, not only at Abu Ghraib. They are happening every day in Iraq and Afghanistan, and we pay some smidge of attention to them, at least, but we are blind to what happens every day in these same states, in this same country, not leagues away and across a vast ocean where we can imagine a human separation: these things are happening on these grounds, in your town, next door to your home. And we look away.

Noted.

Conventional wisdom, May 2007: The prominence of Iowa and New Hampshire in the national presidential primaries is inequitable and unproductive. It weights the voting opinions of a very unrepresentative class of Americans over every other. We should allow each state in the union its fair say in the primary.

Conventional wisdom, May 2008: Clinton needs to step aside. The race is already won, and having her remain will only cause more trouble. In the past the nomination has been wrapped up much earlier than this, so it's OK to insist upon it.* We shouldn't have to wait for each state to have its say -- that's too long!

Principles. Eh. Too inconvenient.

*I would do that nifty thing where you link to a bunch of posts in the words of the sentence, but honestly, I don't have the time/energy to search out everything I've read over the past several weeks on the matter. Suffice to say the sentence isn't long enough to fit them all.

Sez Ez (about a different subject altogether),

One nice thing about blogs is you can say the same thing over and over again without any editors getting pissed at you. When you're coming up with story ideas, "what's new" is always the first question you're asked. But on a blog, by making the same arguments in response to different news pegs and events, you're actually much more effective at conveying your points. Few writers are so persuasive, and few arguments so instantly convincing, that one bite at the apple will transform the thinking of your audience.

I just wanted to highlight this, because it's something I've been chewing on for awhile re: my growing radicalism over the last several years. On my introduction to feminism, I was, initially, repulsed by a good many arguments even as there was something at the core of the community I felt drawn-to. As time went on, through the repetition of arguments in different ways, in response to different events, I began to understand those arguments better. That is, without a context, the arguments offended my status-quo sensibilities. But as I came to understand the context -- as I saw how seriously rampant harassment and assault are -- as casual misogyny in so many different places was pointed out to me, over and over again -- I began to understand where those arguments came from.

Conditioned blindness is what I called it in conversation with a friend today. We are conditioned from birth to deliberately not see the evidence of oppression in our society. Recognition of it leads to a dangerous place, after all. But if a person has a notion to de-condition hirself, even if not everything is tasteful to hir at the beginning, sie will eventually come to understand where those speakers are coming from.

That's really at the heart of the mainstream's rejection of feminism. They don't understand it, and they have been told from day one that understanding it leads you to want to change it, and that's an extreme position to take, and mostly it just annoys the hell out of your peers. So hey, be cool, don't get on us for shit, just go with the flow. Wouldn't want to put a damper on the mood.

Anyway, I think there's a reason blogs are at the center of a growing feminist community these days. Well, one of many reasons, anyway.

May Twelfth

kaweah river valley

One year ago today, holding hands at the far end of a covered deck over the roaring Kaweah River, my husband and I were married.

This has been my freedom. This has been my life.

He and I became fast friends when I was sixteen and he, eighteen. A year and change later, we admitted what was inescapable: we were stuck with each other. Love will do that to you.

He grew up south of Pittsburgh, in a family home in Castle Shannon, playing in the woods with his two younger brothers. I was raised between Tulare and Visalia, my mother's youngest child -- my siblings were old enough to have begun having children before I was so much as conceived -- bouncing between rental homes until a settlement allowed my mother to buy a run-down home as I was entering high school.

We met online well before it became acceptable to meet online. The internet allowed me a social outlet as a young teen with yet-to-be-understood disabilities, allowed me to grow an identity under the roof of a controlling single parent. And, to the contrary of the current conventional wisdom, interacting with the invisible people in my computer pushed me to develop social skills, which allowed me to fall into an awesome group of friends as I hit adolescence.

It came to a point where we talked every spare moment of every day. And it hasn't changed since.

To this day I'm not sure what drew him to me. Looking back, I see a confused child living with severe depression and toxic levels of self-loathing. But when I look forward and see a young woman fighting to break out from under the influence of fear and abuse, I see this quiet, steady young man standing next to her, coaxing her to come out into the light, step by small step. And I see that same young man realizing a greater confidence with the knowledge of his partner's trust and love.

The both of us have changed so, so much in this time. But as we have grown, we have grown together. We are not compatible in a simple sense of shared interests; we are compatible in our mutual adaptivity: teaching, learning, understanding, growing, and deepening our sense of self only helps our love, trust, affection, and understanding of one another do the same.

This has been my freedom -- this has been my life.

We have come so far together, and I hope we will go so much farther.

I love you, Matthew. I hope this year is only our first of many.

Lazy Sunday

Bookends.

***

On the way to a Penguins game one day earlier this year, we realized we didn't have any dollar bills -- which we'd need to ride the T up to the arena. I ended up in a Petsmart looking for something cheap to break a larger bill. I walked out with a handful of dollar bills and a rattling furry mouse toy.

The toy has since lost its tail but -- miraculously -- the eyes, nose and ears remain. (I've lived with cats my entire life; I know those little plastic and felt additions usually last all of a week.) What surprised me further, though, was that Mitsy is thoroughly attached to this toy. She will carry it around the house and sing and coo at it -- or toss it about and yell. And if you shake it, she'll come running. (She never actually does anything once she's there. She just sits prettily and stares up at you, as if supervising.) I suppose it's as close as anything will ever come to a teddy bear for a cat.

We call him Ratticus.



Of course, what surprised me the other day, when I came home with a new litter box (big enough for our very big Buddy cat) and an impulse-purchase cat toy -- a catnip bee that squeaks when it senses motion or impact -- is that Buddy latched onto it almost instantly. Understand, Buddy doesn't play with cat toys. He plays with pen caps and pieces of plastic and his eternal favorite, twist ties, but he doesn't play with cat toys.

But he plays with Tweety Bee. Maybe this will be his Ratticus.

*

This is a rather engaging story from NPR about two young boys, and two different approaches to their rather obvious self-identification as young girls.

The basic error made by Zucker (and others) is in conflating sex identity and gender. The two are not interchangeable. An effeminate boy is not necessarily a girl at heart. A masculine girl does not necessarily feel attracted to fellow girls. A transwoman will not necessarily express her identity in a feminine way. And -- this especially irritates the gender traditionalists around this country-- a transgender person might not find it necessary to undergo medical transition!

How a child expresses hir identity is certainly subject to influence, from hir parents, hir peers, and the society sie lives in. Gender, however, seems to be far more malleable. The available genders, and how each particular gender is expressed, is going to change from culture to culture. Sex identity, in contrast, isn't as much an identity as in outward expression; it's an identity as in inward knowledge.

Zucker seems to fear that any allowed deviance from a culture's set norms for whichever sex would permanently confine the "deviant" to whatever gender is being expressed. Quite the opposite; allowing more of these so-called deviancies would put to rest the idea of "deviance" altogether, thus freeing us to conduct our lives however appropriate -- confines be damned.

Things I learned yesterday.

• A man coming on to a woman is one thing. A man who holds a copy of the keys to the woman's apartment coming on to her, however, adds a whole 'nother level of scary to the equation.
  
  What disturbs me the most is that when my husband related that his coworker -- who also lives in our apartment complex -- has also had a history of harassment from the landlord, I felt relieved. WTF? The reasoning, I think, is that if he's done it to someone else and they were never physically assaulted, that means I don't have to worry too much about it either. But I know even that is iffy. And either way, I shouldn't be happy that someone else has gone through the same thing. Blech.
  


• When we got on the trolley/subway/train ("the T") last night, all the seats were taken -- we weren't the only ones heading to the Penguins game. I am loathe to ask people for any sort of assistance when I'm out in public, because it opens me up to questioning that I don't particularly want to deal with. So I figured, you know, it's just a quarter hour worth of standing, it won't be pleasant but I should be able to manage.
  
  Little did I know that it's not just being upright on one's own two feet: it's holding on to the rail (holding my arms in any unnatural position for too long is painful) and keeping one's feet planted on the ground. Every time the train stopped, started, lurched, turned, or hit a bump, it meant a serious effort to stay upright and not go crashing into some other poor passenger nearby. And it was seriously hard on me, particularly that one arm, and all up and down the backs of my legs.
  
  The suckiest part is that I then had to walk uphill about a mile to the arena, and then try to maintain my balance on a wet cement "bench" while trying to get a decent view through the people and trees in front of me. I emptied a small handful of pain killers into my bag before we left, and there were only two halves left by the time I got home. And I woke up with an awful headache this morning, that I'm still trying to fight off.


• Gas is expensive...
  
  
  ... no, seriously:
  
  
  
  This same station has before advertised their gas at $2.09 when the prevailing price was just a few cents above three dollars: they were obviously going for $2.99. That was the most tightly-packed gas station I've ever seen -- and I lived in California my first twenty years.
  


• I had a bit of a realization on the way home last night. Stress and pain are irrevocably intertwined, we know. I've never been able to pinpoint a recognizable pattern of correlation in my own life, though. Until I paid attention to how I reacted to point no. one above: I pretty much fell into a slump, blank and depressed emotionally, slow and devoid of any energy physically. This is very common for me as a reaction to any stressor.
  
  And now that I think of it, I know I've read on adrenal fatigue (?) -- essentially, in chronic pain patients, the body compensates for the effect of the "extra" pain with adrenaline, but after overproducing for too long, the system becomes fatigued -- and when traditional "fight-or-flight" situations are encountered, the body just sort of shuts down. Whatever the merits of the condition itself*, that's certainly a fair description of what happens to me when I face very stressful situations -- I just shut down, not only emotionally but physically as well. It pretty much lasts as long as it takes for me to be able to clear the worry from my head.
  
  In fact, it's rather similar in function to a panic attack. What's different are the symptoms experienced.
  

*Ugh, I know I started the "alternative takedown" thing here, and I'm still not entirely happy with people who push scam treatments on people who are desparate or disillusioned enough to try anything. But I don't think scorn should be directed toward the people who are suffering with problems that their doctors can't (or won't) diagnose, for whom traditional means of treatment prove ineffective. These are people who are navigating the world they live in as best they can. If there is judgment to be given, a better focus would be the practitioners who push ineffective treatment on people for profit.

Ring that old bell

"Worth repeating":

That the Clinton people need to get used to the fact that Obama is the nominee. All the hyperbolic "he can never win the general" and the "it's not fair" stuff needs to stop right now unless you want a 100-years-in-Iraq, pro-life, pro-Roberts/Alito Supreme Court, 22% lifetime LCV rating, economic right-winger as President. To spend any time or energy at all nursing your resentments is the most fundamentally selfish thing you can do right now. I hate losing elections, I know how badly you feel, and how hard it is, but there is too much at stake to be selfish right now.

Now now, ladies, you need to stop worrying about your silly female things. We have a lot to get accomplished and we'll never get there if you sanctimonious women's studies set keep making your fuss about all this lady stuff. We do need to keep Roe in place, now, don't we, dears? It would be awfully selfish of you to cost us this win.

Hmmm. Haught dismissal of expressed concerns, threat held over head about women's basic human rights, accusal of "selfishness" (one of the most invisibly gendered words), "there's too much at stake", patronizing "I know how you feel", promise-one-never-intends-to-keep to get back to their issues when this election is over. (Oh, wait, they didn't even bother with that one.)

This all sounds awfully fucking familiar. Seems we've been hearing this for pretty much every fucking election since the fucking invention of elections. Or at least since the nineteenth amendment.

***

Hm. I suppose I should add here that when I voted, I did not vote for Clinton, that I don't share concerns about Obama's viability in the general (and in fact tend to be a bit skeptical about such arguments), that I think Clinton has done some pretty damn reprehensible things over the course of both her political career and her run for president -- etc. But I don't think that's what we're really talking about here, is it?

If you give a cat a bath...

I am an expert at bathing cats by now. I know many people laugh and joke about all the scratches and gashes a person will get away with by the time it's over, but I've never experienced it that way. Maybe it's because I grew up with no less than three cats at a time; I'm also an expert at catching a cat who is trying to run away. When your cats are the only non-parent family member you grow up living with, you learn these things.

But it still breaks my heart to do it. The way they yowl and how obviously terrified they are. Buddy actually tried to bite my husband yesterday as we were bathing him. (Pathetically -- he didn't really try to injure.) And how scared they are of you when all is said and done.

It made me want to cry, honestly. I don't know how the hell I'm going to handle children.

The Rebirth of Venus

I wish I had the disposable cash to buy this shirt.

Rambling on disability and identity

I still don't fully identify with the word "disabled."

It's not the word itself. Certainly I am part of a class of people who have to approach life much differently than the rest of the world. People who don't fit into conventional means of living. Whichever label this group chooses, if any, will still describe the same thing.

... I guess it is the word, then. Because when I think of it that way, my membership in that class is quite clear. But when I think of it as "disabled," the doubt returns.

That is, I think, a result of the cultural attitudes toward disability. Disability strips a person of their personhood. They become less than. Pathetic and pitiful are the perfect words for this attitude. You feel sorry for the not-a-person in a human shell (another trope from this attitude) because they cannot participate in the activities that the culture deems necessary to personhood. You feel sorry for the not-a-person because you can't understand them very well, and that must mean that they have significantly diminished intellectual capabilities.

And most of all, you feel sorry for the not-a-person because they are so inescapably dependent. Especially in the American culture of individualism, people are reluctant to admit that they are dependent on anybody or anything to achieve their "success." Of course, we are all interdependent, whether we care to admit so or not. No middle- or upper-class person would enjoy the quality of life they do now if it were not for the unpaid work of the women in the families, and the uselessly low-wage work of the people -- mostly of color -- who put together their clothing, who tend and harvest and transport the fresh foods they eat, who keep clean the public places they frequent -- and so on. But the insular middle- or upper-class person will deny this, claiming to be a self-made (wo)man. At heart, they deeply fear the implications of acknowledging their own dependence. Their entire sense of self would deflate -- because that sense of self is built upon the person's imagined independence.

I traipsed through my early life blissfully, and willfully, deluded. The word "fibromyalgia" meant nothing to me. I was normal, I thought. Over time, though, I began to see ways in which the condition was affecting my everyday life. How flushed and lethargic I was after gym class, how my muscles twitched and trembled, how my teachers or friends in the next class would express concern about me when I stumbled in the door, slung my backpack beneath the desk and fell into the seat, resting my head in my arms on the desktop. Every day. I would notice that walking a longer distance across campus took a greater toll on me -- and began to purposefully schedule my classes close together. I would remember moments in my past, like how I never seemed to win the races we would run back in kindergarten, tho' I was pushing myself hard -- and how my teachers back then would comment on reports that I was bright and eager, but my coordination was lacking (to this day, I hold my pencil in such a way that strangers will stop and comment on how strange and different it is).

But I was still convinced that I was still normal -- just different. The fibro was something I carried with me -- it didn't crush me.

I recount all of this to provide context. Until my junior year of high school, my condition had no effect on my ability to live my life, I thought. It occupied a different space in my mind. I compartmentalized it away. It didn't exist in the same space as my everyday life. Even as I was quite clearly accommodating it -- modifying my schedule, carrying my tylenol bottle with me (fuck that ridiculous school policy), sitting down the entire lunch period even if my friends were all standing together a bit away from the bench we claimed as ours -- these things were invisible to me.

Of course, that all came crashing down in the following years. A serious pain flare-up in my last semester almost cost me graduation, and I went on to drop out of college -- twice -- because I couldn't handle the workload.

And after that first time, I learned. I went down to the Social Security office to begin my application for disability benefits. When I was planning my return to college, I availed myself of the Disabled Student Services office as early as possible. I forced myself, with great difficulty, to accept that I did need accommodation, and to talk with my professors beforehand to work out a plan. (For the most part, it boiled down to lenience on absences, which were sure to be many, and extended deadlines on projects if I needed them. I was fortunate to have professors this round who worked with me on that matter -- though I still ended up dropping half of my classes mid-semester.)

I was struggling to accept myself, to truly understand who I was. All along I had been under the impression that I was no different from anybody else. I had pain, yes, but it didn't make any difference in how I lived my life. Or whether. I kicked and screamed and cried out, because it wasn't fair. All these things I wanted to do! I had to accept that I couldn't do them. I couldn't take fifteen units and make it through the semester with passing grades. I tried modifying my schedule and adjusting my approach and twisting around whichever way I could to make it work, but eventually I was down to two classes and I couldn't even handle those and also handle my meals, laundry, showers... what did this mean? I didn't want to think about what it meant. It depressed the hell out of me. Everything I thought I was, I wasn't. Everything I'd ever dreamed of doing was being taken away from me.

What was I?

"Disabled." I used the word reluctantly. Following Social Security's definition, I certainly was disabled. Due to my condition, I was unable to work enough to earn substantial gainful activity. It was hard to deny that.

But the word didn't really make sense to me. It didn't fit. It didn't feel comfortable. Honestly, I felt dishonest using it.

There are at least two parts to that. First, I was, and am still, painfully aware of the fact that quite a lot of people are of the opinion that fibromyalgia is a condition of fakers, hypochondriacs, complainers, hysterical old women who make a life-threatening crisis out of every toothache and stubbed toe. The phrase "fibromyalgia is bullshit" is, I think, the first or second most common search that leads to this blog. A lot of this is still internalized. I know it for the bullshit it is now, but in years before, I was deeply afraid it might be true. I was raised to always know that everyone else knows better than I do, that my opinions were meaningless, that I was just a naive little young thing with no worldly experience so how could I know anything? So, I was always questioning myself.

Second, it felt appropriative. After all, I looked healthy. I had two working legs to carry my weight, two working arms to perform whichever task, and a working brain to process information. I wasn't obviously disabled, and so I must not actually be disabled.

Combining those two, I questioned myself: if I can sit here at my computer all day, reading and writing, why can't I sit at a desk in some office somewhere and stuff envelopes or push paper? (I know the answer: simply being "presentable" is a serious effort that drains me of strength, and being outside the home means little to no resources available for me to recover that strength, from having a comfortable chair to being able to slouch or lie in the chair or pull my legs up or stretch them out however I may need, to being able to take to the bedroom and rest whenever I feel I need to. And doing something that is required of me means stress, which especially affects my tense shoulders and neck, making migraines all the more probable.)

I must not be disabled, then. I'm just... well, I don't know.

I actively identify as disabled now. I know there's no better term to fit. I am working part time, but I am not guaranteed to be able to work part time continuing forward: much like how the poor are always teetering on the edge, and any one small thing that goes wrong means worrying about whether your heat will be shut off or whether you'll be outright evicted -- managing my pain is a difficult job, with plenty of opportunity to make mistakes, and if I don't build myself a healthy buffer, having one thing go wrong could mean descending into another serious flare that leaves me unable to work at all.

And I'm beginning to realize that "disabled" does not have to be tied to one's ability to work for pay. It can affect any of various areas in our lives, from personal care to our social lives to our recreation/leisure time. And to be honest, the focus on work-for-pay as a top defining aspect of self is an ableist construct itself.

But when I am out in the world, I am aware of what "disabled" means to anyone who is listening. And I have not quite kicked what of that I've internalized. When I call myself disabled, I see clearly what the people around me see: a healthy young woman, slim, standing upright with decent posture, dressed prettily, with her hair done, with no visible deformities, who speaks clearly and normatively, who uses no visible mobility aids, and who is not accompanied by any sort of personal assistant. No person would look at me and think "disabled" without being told so. And even those who are told so may doubt.

Not many express that doubt bluntly to my face. But I know what I've heard from people who don't know that I have a disability and who think I'm their ally by virtue of being ostensibly abled -- people who remark on others, disparaging them, making "fun," mocking them, not just for what they are, but most of all for daring to demand recognition. For daring to expect respect.

I know what you say about me behind my back. I've heard it from you about other people.

It is a privilege, I know, to be able to go about the world and not be immediately identified as disabled unless I choose to make it known. But it is frustrating to me, knowing that when I identify myself as such, I am more likely to get someone who will sneer privately at me than someone who will be sympathetic and understanding.

I have not yet begun, fwiw, to deconstruct the meaning and history of the word itself. I know there are many who have, and who have their own preferences. For now, I don't stick to any one word or phrase, but I will respect those who wish to be referred to one way or another.

I am still working to resolve my own identity. I do identify strongly with this movement in favor of people with disabilities -- for their rights, for their acceptance, for their betterment. I don't know if "disabled" is the right word for it. But I know that this is something I care deeply for, no matter what it's called.

Things that bother me, Part (n)

maybe I'm the one
maybe I'm the one
who is the schizophrenic psycho

I feel my heart rise through my throat every time the beats for this song start playing on the radio.

Schizophrenia and psychosis are two mental conditions that apply to multiple members of my immediate family. Severe depression and anxiety are also present.

The people who write (and sing to) these sorts of songs don't know what those words mean. To them, they're simply a stand in for "Angry Mean Bad Crazy Person."

Those people can fuck right off.

Define "able."

What does it mean to you to be able to do something? To be unable?

What does it mean when you can do something? When you can't?

I have always had a somewhat nebulous notion that ability is a binary function. That there is a bright line between can and can't. That there are certain consequences serious enough to push one activity over into the "unable" pile. And that those consequences have to be pretty damn dire.

Trying to work this out through examples.

I can't mow the lawn. That is, literally: I am so weak as to be unable to move the mower. Not even an inch.

That one is obvious, right? Most people will give me a pass on that -- that is, pass on scrutinizing my claim. (When you live with a chronic pain condition, you become quite used to people scrutinizing every single thing you claim to be able to do or not do, analyzing your every statement, trying to catch you as a faker. No, I am not paranoid. I invite other invisible-illness-ers to back me up in comments.)

But what about something else?

I can't wash the dishes. Let's break this down to try to understand it better.

I can hold the sponge. I can push it around the surface of a dish -- that encompasses both the arm/shoulder movements and the mild pressure applied. I can stand at the sink for an extended amount of time.

But. After a couple minutes, I start to feel the pain in my lower back from standing for so long. The temperature of the water becomes increasingly painful on my hands, feels as though they are being held in a hot fire, though they are not actually burning. As time goes on, my legs begin to feel wobbly, although I look perfectly steady to any outsider. The pain in my back, hips and legs gets worse and worse as time goes on, to a point where it's blocking my ability to think -- the only thing I am aware of is the pain I am feeling.

And then I sit back down here at the computer. And after a couple hours, I might be fine.

So. Can I or can I not do the dishes? Is it that I can do them, if my symptoms are not outwardly visible? Is it that I can do them, if the pain clears a short time after? Is it that I can do them, if the pain is not so severe as to render me physically unable to stand? Can I or can't I?

How about something a little harder:

I can't go out tonight. We'll break this down again, but this time I need to provide some context.

I can go out tonight, that is, I am physically able to somewhere that is not my home.
I can go out tonight, that is, I have no other activity set for that block of time.

For the sake of this experiment, let's also say outright: I can handle whatever activity I would be doing tonight. (Attending a concert, shopping, working, attending a sport game, visiting a friend's home, etc.)

So that is, I can lift and lower my arms to fix my hair. I can wear outwardly presentable clothing, I can put it on myself, I can handle wearing it for an extended period of time. I walk out the door, I can drive my car wherever I am headed. Once there, I can stand upright, I can sit down. I can be social. I can handle light physical activity. I am well enough to make it through all of this and drive myself home. I won't be absolutely sapped of strength after all is said and done.

But I insist: I can't go out tonight.

Why?

Let's say: I have already participated in several outside-the-home activities in the last week.
Let's say: I have something big coming up that I know will take up a lot of energy.
Let's say: I just came out of a flare-up within the last month.
Let's say: I am starting to detect signs of a flare-up coming.
Let's say: I have been having shoulder or neck pains today, and even though those pains haven't traveled to my head quite yet, I know that the more I do, the solider the chances that they will.
Let's say: I have a sense that I would suffer later if I went out tonight, even though I feel fine now. (Sometimes my pain does not register as pain -- I don't feel anything -- yet I still recognize something wrong.)
Let's say: I just don't feel like going.

So? Can I go or can't I?

With fibromyalgia, and I'm sure with other chronic pain conditions, the problem is not simply pain felt in the immediate moment. Pain is not a binary transaction, where each activity either causes you pain every time you perform it or else doesn't cause you any pain any time you do it. Pain is not a simple spectrum, from smiley-face to crying-face, from "fully abled" to "completely disabled." There is not a point on a 1-10 scale at which one becomes unable. Disability is not a matter of the pain being too severe.

This is not how chronic pain works.

That's what it's not -- but it's not very easy to explain what it is. The spoon theory does a pretty good job. Others have used the same concept, but with a different object for the metaphor: marbles in a bowl, etc. For my own life, I feel they miss the multidimensionality of the pain. The metaphors are a good shorthand, and they are excellent for explaining how chronic pain can affect a person's life to people who don't quite understand. But they only cover one plane, so to speak.

This is going to be complicated. Bear with me.

Pain builds. But it does not build in a strictly predictable way. I can participate in activities that cause a certain amount of pain, pain which is not disabling at the time it is felt. But while I feel the pain in that moment, my brain also stores that pain in a "cache" of sorts -- which only has a certain capacity -- where it stays until it is flushed out. The body is continually working to "flush" the cache entirely, which happens bit by bit when I am at rest, and which I can help along by resting my body in a soft but supportive place, in a comfortable position, with not too much light and noise (but that can interact with my anxiety, where if I am feeling awake, I have to have something to feed my brain, be it reading, music, or some low-energy mundane physical task). Heat helps relax my tense muscles. Making sure my medication is taken on time is imperative, no matter what. I can take painkillers if necessary, which don't work by flushing the cache so much as they work by blocking my knowledge of the pain. I do have medication that helps flush that cache, but it is maintenance medication, that is, I take the same amount all the time. So if I am dealing with extra amounts of pain, I can't simply take more of that medication. So basically, I cannot force my body to flush the pain from that cache, I can only enable it to do the work it is trying to do.

When I am doing something that causes pain, the flushing mechanism sort of shuts down (unless it is an extremely low level of pain -- which is why I spent a lot of time at this computer -- keeping the brain well-fed to keep it from going crazy, while minimizing stress on the body). The more pain that builds in the cache, the slower and smaller that flushing mechanism becomes. And the real kicker is that the more pain that builds in the cache, the more painful activities become. Standing upright may cause me next to no pain one day, but another day when I have been doing a lot of work and have not had adequate time to rest over the past several days, standing upright will cause a good bit of pain.

And things fluctuate. Sometimes, standing upright causes me some amount of pain while sitting down causes none. Sometimes, sitting down causes moderate pain while standing upright causes almost none. Sometimes even lying down is untenable. (Especially in the mornings, when my bones are very stiff and my muscles very sore from being in the same position for so long -- to my husband's disappointment, on the weekend mornings when we like to cuddle for a while before facing the world.) Sometimes, even on a day when I have otherwise been doing well, I will experience pain doing something that is normally painless for me -- or even find something easy that normally causes some pain.

Then, the great cosmos throw you several curveballs. First, sleep. Having the exact right sleep habits will also enable my body's flushing mechanism to move along smoothly. But it has to be exactly right. I have to go to bed when I feel tired, and I cannot wake myself earlier than I would wake up naturally. Yes, you read that right. I have to allow my body to sleep as long as it needs. I have found that inevitably, when I wake myself early, whether it be five minutes or five hours early, my "pain flushing mechanism" is pretty much completely destroyed for the rest of the day, and possibly reaching into the next couple days as well. Whether I get myself out of bed the first time I wake, or stay in bed and fall back asleep until I can't fall asleep anymore, depends on whether I am in a good state or whether I am needing any help I can get to get rid of the pain. I have found that I can get away with waking up early a few times a month -- two or three -- and not too close together. Any more than that, and my ability to flush the pain out of that "cache" is decreased more and more.

Second, stress can affect pain; they are interconnected. On a day when I am well physically but am dealing with a lot of emotionally heavy things, pain will begin to build in that cache, even though I am not really doing anything to cause that pain. Or if I am, the pain will be multiplied by a factor because of the stress. And say it with me now: that multiplication factor is not correlated with the severity of the stress. Sometimes a very small amount of stress will mean much much worse pain. Sometimes a great amount of stress will hardly affect my pain at all.

Third, pain is not the only thing you are dealing with. Ha! Did you really think you could get away with that? Fatigue is another symptom, and it builds too, although it does not operate in the exact same manner. Fatigue is not simply a matter of not having had enough sleep, although that certainly contributes. To simplify, fatigue is more a matter of not having the energy to get up and do the things that cause me pain. :) During the more severe times, it is when I feel that in the fight between my body and gravity, gravity is winning. It is when any small movement takes concerted effort. It is when the body feels dense and heavy. But other times, it is when I cannot seem to force myself to do something, even though physically I feel pretty much fine. When I need to get up and, say, do the dishes, but I can't seem to force my body to stand up and walk to the sink and start the chore. I stop whatever I was doing before, and I prepare myself to stand, but my body just sits there. And my mind goes blank. And eventually I get myself up and do it, but then I sit right back down when I'm done.

There are also cognitive difficulties, and of course, they are interrelated with all of the above, and all contribute to each other -- that is, great amounts of stress and pain may contribute to cognitive issues, though it is not 100% predictable. I can be in serious pain, but my brain is operating perfectly (in which case I get very frustrated because I can't do anything with my brain!!). Or I might be feeling ok physically, but find it difficult to concentrate. I'll be staring at words on the screen and not even be able to register them as words, and read them, without great effort. In that case, I can forget trying to comprehend meaning and form my own thoughts about them. There are other manifestations of said difficulty -- for instance, I am very imprecise with my words, which is probably noticeable to an extent here, but is particularly bad in speech. That's because my brain is putting its processing power into forming sentences from thoughts; it doesn't have much processing power left for searching the brainular vocabulary files for the exact right word. Mostly, I try to sketch out a vague shape of the idea in my head, and go in and add detail when I can afterward; I usually don't have the brain power available for being precise when speaking.

That's just a sampling. All of this is quite a lot to juggle. Managing my pain takes up a great deal of my mental ability. I have to devote serious thought to how every little thing is going to affect me. I can't just "forget." I am always aware of this. I have to micromanage my entire life if I want a chance at doing anything that I want to do. This means, to bring this conversation back full-circle, sometimes avoiding activities that I might be able to handle in the moment, but which might contribute to a worse physical state in the future.

Hopefully this paints a clearer picture of what it means to live with chronic pain. And, I hope, we can use that picture to inform how we think about ability. To almost every abled person and even many pwd, it is a simple concept, easily distinguishable. It is one or t'other. But for me, it's not. My ability to do one thing or another takes a lot of thought and consideration. And sometimes, I get it wrong -- that's what happens when you are dealing with something that is, at its core, basically unpredictable. But that doesn't mean I don't understand my body at all, and that when I tell you I am or am not able to do something, I can't be trusted to know. But I suppose that's another post altogether.

Please do leave your thoughts in comments. Fellow chronic-pain-ers, let me know if what I've detailed here matches up with your experiences, or if it's not quite right. Give me your thoughts on what ability means. I think it will gives us a lot of insight into what disability means too.

Blogging against disablism

Jill(?) writes:

Accessibility is not and should not be just about ramps and elevators (though these things are certainly a lifesaver for me personally), but it should also be about addressing mental needs, emotional needs, spiritual needs.

I.

Our society, right now, is structured around the needs and expectations of a young (but not too young), white, cisgender, male, heteronormative, fully abled person. When issues of accessibility present themselves, the defense is: "We couldn't have expected a sick person would try to" use this service, be in this place, pursue an education, seek elected office, petition its government for fair treatment.

Put another way, the majority people are abled in pretty much every way, and even the disabled as a whole are not disabled in the exact way that each individual disabled person is -- so of course individual institutions, from the largest to the smallest and most localized, could not have prepared for [insert whichever specific disability the person trying to access has].

The same concept comes into play when a city has installed a wheelchair ramp some place, somewhere, and a person with a disability is petitioning for access in some other way. Well, we already do this much for you -- what more could you people possibly want?!

What an unfortunate and narrow view of the world! How small a world these people experience. We are closing off contact from a great many people who have so much to add. As we restrict access to institutions and continually narrow our performed roles, we lose more and more richness and depth in our individual lives.

Things could be different. We could recognize that a person can have something to contribute even as sie benefits from support and assistance that most do not require. We could recognize that it would be in our own benefit! to provide that support and assistance, and that even beside that, these people deserve to be included by merit of their personhood.

Right now, though, for a good many people, the fundamental personhood of the disabled is a hard pill to swallow. Maybe someday.

II.

There is an all-too-common attitude across the population. Simplified, it says: Don't make me feel uncomfortable, thinking about your differences.

Ew, you bleed from a hole between your legs? And it happens every month? That's gross! Don't make me feel uncomfortable!

You say your voice as a person of color is systemically silenced in favored of white persons? That's ridiculous! That would mean that the due given to my voice is unmerited and that I should change how I speak to make way for people of color -- that's too much for me to deal with! Don't make me feel uncomfortable.

Prosperity is solely a matter of motivation and effort. You say that I was privileged by my birth into a stable middle/upper class family? But I've worked so hard, and that would mean that what gains I've realized weren't the result of my hard work. Don't make me feel uncomfortable!

And so forth.

As I've insisted in the past, it even manifests in more progressive persons. Consider the argument that periodically crops up when a person is told that no matter what they do, they still bear some culpability: but that means that I can't make it go away by saying the right words or joining the right groups or buying the right things! Don't make me feel uncomfortable!

Well, bully for you, because guess what? We live that "discomfort" every single day.

It takes various different forms for various classifications in various sets of people. Some seem far more innocuous; some bear that evident stench of bigotry. Neither is any less problematic. Both dismiss the experiences of members of the historically oppressed group, simply because they aren't pleasant to think about.

Which is why women are reminded to smile by men who regard them as decorative elements and don't want to be bothered by the thought of their personhood. Which is why sick people are urged to "lighten up" and to "learn to see the silver lining" and to "think positive" by people who think of sickness primarily as either the death of the person inside the body. Which is why people of color are told to stop being so angry by people who actually think it is possible to be "colorblind." And so forth.

Wouldn't want to make someone uncomfortable, after all.