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?

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.

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.

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.

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.

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.

notes

I. I HATE THESE FUCKING SPASMS AHHHHH.

II. know that third word in this blog's name? yeah, it's not just the climate manifestations that's referring to. my brain has been fraught and frazzled and frustrated for days now. it's like there's a thick haze on the lens through which you view the world, so it takes so much more effort to make anything out, and then double that effort to make anything of it, and oh hell, just forget trying to actually then form and communicate a cohesive message to the outside world through that haze.


III. please excuse the design disarray. I have been mucking about with my templates and lost the sidebar content. and item II means that it won't be worked out immediately. give me a week or three.

IV. I so want to contribute to the disability carnival coming up at cripchick's. I don't know that I'm in a state right now to write something fitting by the deadline. regardless, check that out when it goes up.

V. I have awesome friends.

VI. I am noting this here to put pressure on myself to do this: I have two posts planned, for May 11th and May 12th, both days of significance for me. we'll see if I find myself able to follow through, or if I call it in at the last minute once again.

VII. fucking Versus. fucking work. I've had to work three of the last three round-two games the Penguins played against the Rangers. so I missed them. then tonight, finally, I'm off for the fourth game. and it's on fucking Versus, a channel we do not receive now that we've disentangled ourselves from the pulsing evil that is Comcast. we'd go and watch it outside Mellon Arena (totally awesome that they're doing that) if it weren't for the fact that husband has to work tomorrow. le sigh.

VIII. wii is awesome. yay mario kart!

What was that again?

So, what do the three presidential candidates have to say about disability?

Oh yeah. That. Doesn't ever seem to be much of a topic, does it?

Michael Bérubé explains, in his somehow simultaneously meandering-but-crisply-clear manner.

What I found interesting is that this:

The nine-page .pdf, “Barack Obama’s Plan to Empower Americans with Disabilities”, says many of the same things Hillary does – about [...] hiring 100,000 people with disabilities in the federal government (except that someone needs to tell the Obama camp that it’s Executive Order 13163 Obama needs to reinstate, not 13173, which created an Interagency Task Force on the Economic Development of the Central San Joaquin Valley; reinstating 13173, whatever its merits, probably won’t do much for disability policy in the United States).

would benefit me either way! ¡Vive la valle central! God, I miss home.

Main Street and Church, Visalia, CA from Johnny J Lopez

Snapshots: Saturday

(Part of) a day in the life...

I write these bits and pieces because I want to fill out, flesh out, what it means to be -- well, any of the parts that make up me, anyway. In this case, there is relevance to my physical condition; what it means to be fibromyalgic, disabled, living with an invisible illness, managing all of that in a balanced way.

Please note I haven't had time to review and edit this. I am going to bed.

***

Yesterday I was scheduled to work 11-5pm. At least it was long enough a shift to allow a break -- usually I wander around the mall (at the end of which is the camera shop that employs me) and window-shop just to get my mind off the sales floor for a bit. I look at the kitsch in Hallmark and imagine how I'm going to decorate my someday dream-home (which will be small and comfortable and easy to care for). I browse through the clearance racks at Dots -- seriously, nice work pants for $5! -- or talk to the people in the jewelry shops and food places who know us fairly well. I will admit to having hobbled down to the Bon-Ton one time and lay on the sample Sertas.

I was working with my manager that afternoon. I get along fairly well with her, although she has her faults, just as any other human person. She had called me in a panic that morning; our alarm codes were all changed recently, and she needed mine, rightnow, and after I read it to her she belted, "I'll call you back later" and hung up. Apparently the alarm went off for a half hour, and the security guards and police were there, and the alarm company refused to turn the alarm off until she told them her alarm code -- which she didn't have -- even as she offered to prove her identity.

She was, understandably, flustered.

But the day went fairly well otherwise, very steady, and the customers were good. (Retail folks know: there are Good Customers, who are open and amicable but don't pry, who are patient and cooperative -- and there are Bad Customers, who put you in a sour mood, because they don't see themselves as working with you, but against you, no matter which position you see yourself occupying.)

I took one half of a painkiller before leaving for work, and another half two hours later, maybe half after noon. I took my midday medications around two-thirty. And maybe an hour later, I went on break.

When I returned, I had to jump right into things; my manager had three people to be helped and only one of her. And the amount of customers only grew. It was a blur for the following hour; I was juggling at least two customers at any one time. Maybe ten minutes before five, as I was talking to a twenty-something couple who had just walked in to look at digital SLRs, the older couple behind them insisted that they were "just" there to pick up -- what, photos, a warehouse order? Those are quick to take care of -- no -- a camera. And I've learned as much in my time here: there is no such thing as a quick camera sale. We have a bundle of free crap, and some other valuable extras, that we have to explain to the customer. We may be a nationwide corporation, but we operate like a mom-n-pop shop; we explain the basics of working the camera for folks who don't already have a handle on it, for instance. You don't get that at Wal-Mart.

Anyway -- they were obviously not happy to be waiting in line, so I left this couple handling two entry level SLRs at the front of the store to run back and grab everything they were picking up -- which was not simply a camera. It was a printer, and a package of memory cards, and a bag, and a host of other accessories. And I started to wrap up the sale, explaining the Bundle of Free Crap to them, when one of my coworkers walked in. I called him over and handed the older couple off to him, asking him to explain everything to them and ring the sale up, saying -- out loud -- "I do have two SLRs out over here!"

I was flustered too.

The young couple was, in fact, a young family. It was their first time out with their ten-day-old son. He must have gone through four or five cycles of sleep and wake in his time there. They handled it exceptionally, for it being their first time; they would trade off holding him, or feeding him, or rocking him, while the other partner was talking to me. They were very gracious, and the sort of customer who is easy to talk to. It was obvious the husband was more invested in the decision than the wife (who, being a new mother, was also exhausted; he didn't seem to understand why she kept going to sit down at the print bar) although they were both interested.

They ended up buying the Nikon D40, which is being cleared out -- photography, just like fashion, has a spring line that pushes out the last season's worth of product -- and the zoom lens. I went through everything they would need (bag, memory card, filters...) with them, explaining it to them the whole way. At one point, my manager, who was getting her things together to leave -- it being well after five at this point -- teases me about my husband surely wondering where the hell I was. I had been avoiding saying anything, even though it had been on my mind the whole time, because you could tell these two were the sorts of people who would feel bad for it -- and yes, they did.

I explained the damage protection and the rewards club; I explained the Bundle of Free Crap item by item; I pulled together the financing paperwork and called it in; I bragged about our brand new lab (which comes bundled with higher expectations for certain photofinishing products)... I don't know how many customers had come and gone in that time, but it was a lot, and they were, eventually, the only ones left. My manager had gone. My friend/coworker/replacement was cleaning up the mess inevitably left when we get slammed like that, and don't have the time to put everything neatly in its proper spot.

They left, happy, and thanking me profusely, around six-thirty. And once they were out of sight, my entire body fell slack, and I let out a long sigh. And I noticed --

It had been at least six hours since I had taken a the medicine I normally take every two.

-- I felt the pain suddenly. I hadn't even noticed, not that entire time.

And here's the thing. There are a lot of times when I don't notice the pain. That was my state for basically the entirety of my childhood. I had no reason to believe otherwise, so I learned to categorize how I felt as normal, because there was no outward indication that it wasn't.

But when I finally stop doing, and let myself just be, the pain makes itself apparent, bit by bit.

That's the problem with my early years. I never let myself stop. I shouldn't have to stop, was my unconscious thought process, because there's nothing abnormal going on to make me have to stop. And so I would force myself forward, no matter what. Even when I was sick. Even when I felt miserable.

And here's another thing. I missed some ungodly amount of school days every year, from pre-K to graduation. But that doesn't mean that I wasn't pushing myself to continue, attending school when I was sick and sapped, when I should have been home by any reasonable measure. It's just that I was in such a condition as to be missing that much school even while I was putting forth such greater effort than most of my peers, even the most driven of them.

Enough of those other things.

I made my way to the back, where I kept my belongings, and called my husband to apologize. And after a quick chat with friend/coworker, I left for home.

OK: here's one last thing.

Even after resting my tired body for the remainder of the day, and heading to bed early, and rolling out of bed a bit late -- even after my husband helped me wash myself in the shower this morning -- even after the painkillers --

I felt awful today. The first words I heard as I walked into work today were "You look tired."

And I put on makeup today. For the first time in weeks. Even with three types of concealer over the dark circles under my eyes, I managed to look significantly worse than usual, in terms of physical condition.

I was slow and sluggish. I slurred when I spoke (quietly). I shuffled instead of walking. I sat down any opportunity I was given.

Understand this: I am a driven person. When I am not weighed down by the pain and exhaustion, I am up and moving, doing, always doing something. I throw myself into whatever I am doing. I don't slack. I don't dawdle.

I suppose, though, in the end, I am that way because of this weight I carry. If I don't put everything I am into whatever I am doing, chances are it won't end up done.

The point of all this is that my pain is not a simple addition and subtraction problem. When I was helping that couple, I felt like I could keep going just fine. But I can't trust that feeling. I kept going, in this case, out of necessity. But all that time on my feet, upright, good posture, being social, keeping my shit together -- all of it without my pain medication -- I couldn't just make up for that by taking my medication (which I did) and resting for awhile. That shit builds up, even the smallest of it, and for every inch you add, there's a mile more I have to go to make up for it.

If that makes sense.

I'll leave you with something I have noticed over the years: if I'm not smiling, I'm not well. Really not well.

Ever since I went off the birth control and started the Lupron (can't really separate the two) I have been having these awful spasms in my lower back. It's not tremors; it's a single spasm, a strong jerk of the spine from somewhere in the upper pelvis area.

And it's getting fucking annoying.

I used to have spasms all the time; back in middle school, I was having them daily. Back then, though, it was at the base of the skull. A couple years after I started on the trazodone (Desyrel, an antidepressant, though I used it as a sleep aid) (twelve years of age), my doctor put me on cyclobenzaprine (Flexeril) to reduce muscle tension, and the spasms mostly disappeared.

It's both startling and outright painful. In the former case, it feels like a sharp bony hand reaching in through your skin and gripping your brain, like someone sticking a sharp needle filled with poison right in through the base of your skull. The whole body goes stiff and it takes a moment for me to crack my neck back into normalcy and free my head of the demonic interference. In the recent case, it feels much the same, except that it actually physically moves my body around, and jolts my very, very tense shoulders -- the same shoulders I go to great lengths not to strain, because pain in the shoulders inevitably travels upward, and if there isn't sufficient intervention (in whatever way -- painkillers, heating pads, lying down to take the weight of gravity off my head and neck, etc.) ends in a disabling migraine.*

And I've had to explain this as best I could to my husband, who gets a kick out of sneaking up on me, that surprising me is ok, but when you marry a physical sensation to that startling, what I get is, for lack of a better word, an intense shock, and it isn't painful in the immediate sense of the word (like getting a cut or a bruise) but it just does this thing to my nervous system, and it's just as bad as outright "pain." On the level, perhaps, of a sucker punch to the gut, or cracking your head off a wall or floor (when it's not serious enough to concuss or make unconscious).

Maybe the problem is just that we don't have a concept for that kind of "pain," as a society, because most people have never really experienced it.

Whatever it is, I'm tired of it. It happens in bed, it happens at work, it happens when I'm doing the dishes or sitting here at the computer. Maybe it's a reaction to the Lupron, maybe it's an interaction with any of my numerous other medications. I'll bring it up next visit to my wonderful gynecologist, but for now, I'm just sick of it.

*I use the word disabling quite literally here. When shoulder/neck pain and/or a headache become a full-fledged migraine, for me, I'm down for the count. I have to have a soft place to rest my head (and body), free of light or sound, so I can curl up and just wish for death instead of actually acting it out. I can't scream, can't cry, can't groan, because the movement inflames the pain. You can tell when I'm headed that way, because I speak very softly, attempting to control my speech such that my mouth moves as little as possible. My shoulders, neck and head stay stiff, because any movement causes pain, and pain building up such that it becomes unbearable is the whole problem. There's a point where there's no turning back, and I have to just suffer it out, taking the painkillers not because they're going to make me feel any fucking better, but because if I don't, it's never going to go away. I can be stuck in this situation for a day -- it never goes away in mere hours -- or for weeks on end, depending on how bad it is, how much I did, whether I can take the adequate time and have an adequate space in which and adequate resources with which to recover.

There was one time, during my first attempt at college, that I was in one of the art rooms for my 2-D Design class (with my favorite prof in the world), working quietly on whichever project it was at the time, surrounded by fellow students working quietly on theirs. And the simple scratching of pencil on bristol, rustling of paper, adjusting of seats, the hum of the lights overhead -- I was ready to throw up, and I knew I had hit that turning point, and I knew that I had to get my ass in my car and drive home right then, because five minutes from now I might not be able to drive safely, or at all. So I gathered my shit, quietly, stiffly and robotically -- moving my body, and especially my shoulders, as little as possible -- and left. Fortunately the prof had gone out on errand, because I would not have had the time or strength to stop and stand and tell him why I was leaving, and have him ask was I ok, and would I be ok and is there anything he can do and make sure you get this done or whatever -- I doubt I would have been able to conduct myself safely in a moving vehicle if I had waited through that, and forced myself to speak, against every inclination of my aching body. I left, without saying a word even to my class partner, and walked as quickly as I could while exerting as little force as possible (do you folks know how fucking hard that is? when you're in that state?) to my car, and threw my shit on the passenger seat and lowered myself down into my seat, and squinted my tired eyes the whole way home, and every step I took up to the second-floor apartment jarred up through my body from heel to skull, and I closed and locked the door to my room and fell down in bed, and I don't remember anything after that. To tell the truth, I don't remember anything after walking out the art room door, but I can tell you what I did because I know exactly how it goes, I've done it so many times.

And you know, I find it interesting that I cannot come up with an adjective that describes the intense sharp pain I felt in my entire body. I know aching, tired, sore, etc. but none of those describe that awful feeling, the tense and stabbing feeling over every inch of skin and miles deep below it. Granted, I've never been good at vocabulary.

Consider

And it doesn’t matter how much you may *think* you support women of color; you can’t self-proclaim yourself an ally. That’s for the oppressed group to decide. Ico

This rings true, circumstances (and particular social class) regardless.

Word

Nobody’s ever defended themselves against assault charges by claiming “it doesn’t hurt when I punch me,” and you’d presumably think it pretty ridiculous if they had.

Conversation

This has been on my mind lately, as I slowly page through the vast material on disability rights, activism, social model...

Are there privileges within disability?

I speak as someone with "invisible" disabilities. I know that because of this, I am afforded more access to society than persons with visible disabilities, in multiple ways. Doors, walkways, and seats are designed for my body (at least in purely spacial terms; many seats are untenable for my sore bones). Counters are built at a height that approximates convenience for me. And in purely social terms, people do not look at me and think "disabled." (Neither do they look at me and think "abled" -- as an abled body is the default body, it requires no thought at all.) Thus I am treated as though I were a full person. Any condescension directed my way tends to be because I am young and female. And, at least in my experience, I am still more of a person in most eyes as a woman than I would be if I were instantly identifiable as handicapped.

I am tenderly aware of this condition. And I wonder whether other pwd, those challenged in different ways, see this condition as one of privilege. And I worry, when I talk about disability, about appropriation. About using words that pwd have used for themselves for ages, even though ostensibly they do not apply to me. About taking up a banner that has been carried throughout the years by people who do not have the advantage of being able to blend in, to pass.

And I figured I would put this out, as a request for the thoughts of those who approach the world from an atypical place.

I do want to clarify that I still do suffer barriers to participating fully in society. There is a reason I quit study, twice, even though I miss college dearly -- no matter how I have attempted to adapt, I cannot read physical, printed-on-paper text at length; it inevitably triggers my disabling migraines, which I go to great lengths to prevent. There is a significant degree of cognitive impairment from the fibromyalgia to begin with, and when you add the medications I require to function day-to-day, my ability to concentrate and process thought is considerably decreased. I can never stop being aware of my physical capacity; if I go out on a walk, I have to keep in mind how much energy I have in reserve -- after all, I have to be able to make it back home. If I value my health, I can never stop thinking about it.

This is to explain the place I am coming from. I do detect a defensive tone on re-read, and I apologize for it. Know that it is not directed at pwd or progressive allies; it is a reflex built up by years of fighting a system that assumes that because I look "healthy," any complaints (of personal pain or of societal barriers) must be overblown.

What are your thoughts? Where are you coming from? What barriers do you face? What privileges do you see? What do you think we can do to address these?

(I am very nervous about putting this one out there -- please do offer criticism if you have any, but please be gentle. Keep in mind I am relatively new to all this.)

I've calculated my age to be...

approximately 71.

The average age of menopause is 51 years, and they say fibromyalgia adds twenty years to the body...

:)

First Lupron shot was yesterday. It was a bit strange -- normally there's that whole dance in the doctor's office: they hand you the gown, then close the curtain (and the door) behind them, let you change, drape a sheet over the "private" parts, and come back in once you're all gussied up. I always have to laugh at it, because I certainly have no qualms about seeing my own genitals. I understand the reasoning behind it, most certainly, but it still feels a bit silly to me (when I'm visiting a doctor I trust, anyway...)

This time, my husband and I walked back to the room, the nurse closed the door and instructed me to lower my pants and lean against the examining table with one leg relaxed. I waited a moment to see if she'd leave -- no, she stood there preparing the injection. I looked at my husband. He certainly had no answers (I don't think this is an experience he's at all familiar with). So I obliged.

The shot was nothing. Bloodwork hurts worse than that. I hardly even noticed the needle.

But I didn't expect it to kick in quite so quickly. Symptoms are supposed to worsen for the first few weeks, and boy did they ever -- I got out of bed before 8:30 this morning, unable to fall back asleep for the pain. Lower back, lower abdomen. None of the medication is really helping it at all. (It's rare, on a day when I have nowhere to be, for me to get up before maybe 10AM. I purposefully sleep as much as I possibly can, in an attempt to make up for the fact that my sleep is only fractionally as effective as a "normal" person's.)

At least I know I don't have to work today, so I can take things at the pace I need to.

You don't have to be normal.

...the person who believes 'I will be real when I am normal' will always be almost a person, but will never make it all the way.

Eugene Marcos (via, via)

We have been told all our lives that to be accepted, to be successful, to be a whole person, we have to be "normal."

And so we strive to change ourselves such that we resemble normalcy.

But it is a rare bird that can adapt itself to living in the water -- or fish that can adapt itself to fly.*

Respect your body and your mind. They operate how they operate, and there is no need to change that, not for anyone's sake. It is not a deficiency. It does not make you lesser. It is not deviancy. It is what you are, and it is good for you.

People on the outside will be uncomfortable with the implications of such a weird and different body (mind) being a good thing, because we have all been indoctrinated into the cult of dominance, where what dominates is Good and Right, and anything that is not the same is Bad and Wrong. It manifests itself in so many different ways even for the same differences. But that is the root of it.

To outsiders, the idea that what you are is definitionally good, because it is good for you, a different person, is disturbing. To outsiders, it says that then, what they are must be bad. And those who think that way will therefore reject you as a person, differences and all.

But there is a different way. There is a way built, fundamentally, on respect. On allowing one another to be what we are, and finding joy in what results. On knowing that when a person falters trying to live in this society, it should not be chalked up to the fact that they are different, but to the fact that society has failed to plan for anything but the dominant, and will then fail in trying to accommodate anything else.

It rests on, again, seeing a person and thinking not: burden, but: potential.

On seeing that person, and recognizing them as a person.

We should all be prepared to accommodate differences, even when it means a change or an extra effort. We should be prepared for this, because we expect as much already from those we are failing to accommodate. We already expect them to change their very being to be able to accommodate how we operate. So we should not protest when we are called upon to open our minds, to change how we think, to change what we do. After all, at least we are not being asked to change what we are.

*I hesitated with this metaphor. I was afraid of the implications. The usual stuff, that pwd are of an entirely different species, that pwd are animals, that pwd are at base un-understandable and therefore nobody should even try. ("We are nearer still when we know we don't have to understand somebody to know he is real.") But at the same time, I don't want to shy away from the implication that we are not all the same. That is what we are pushing to accept. Everyone approaches the world in hir own way, and that is ok, and we don't all have to come from the same place to be able to travel together.

At the same time, I am just taking my first tentative steps in this direction, and I know I will fumble at times. So I invite all thoughts and criticism, so that we can all understand better.

this is new to me. this idea that i should love my body. not hate it.

it's funny, because i was about to say "this isn't a post about body image." but it is, isn't it?

let's cut to the point. i'm not talking about beauty standards.

i'm talking about my body. this physical thing.

i need to stop hating that physical thing.

it works differently. it doesn't work like your body.

but that doesn't make it bad.

this is hard to grasp. i don't like this idea.

but maybe it's better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.

maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.

maybe i need to understand that i just have to interact differently with my body to accomplish that.

and that is not bad. that doesn't make me Less Than. that doesn't even make me different -- or it shouldn't, anyway.

maybe the problem is that i have been so indoctrinated into this culture that i can't even see myself as just being -- it's always how different i am from the "normal" "healthy" body.

you know what, dammit, my body is "healthy." my body is damn well fucking "normal" for me. when i understand how to work with it? i live a pretty damn nice life.

but the culture i live in doesn't allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn't let me live my life like a normal person does.

fuck that.

i have a lot to work on, here.

revelation: i wouldn't have such a hard fucking time learning how to work with my body if my culture hadn't taught me to expect to be The Norm. if my culture hadn't taught me that if you look like you're fully-abled, then you must be. if my culture hadn't taught me that if it doesn't show up in the bloodwork or the ultrasound then it doesn't exist. if my culture hadn't taught me that my pain is simply pathology. if my culture hadn't taught me about welfare queens and "milking the system." if my culture hadn't taught me that disability is both scary and pathetic.

in the meantime, i need to go take my weekly shower, so my gynecologist isn't put off by my oh so gross body when i get my Lupron shot tomorrow.

...maybe i just need to understand that this is how my body works and damn it all, there shouldn't be anything wrong with that -- the fact that there is anything "wrong" is a sign of a fucked up culture -- not of a fucked up body.