I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.

Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.

It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.

“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.

He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.

A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”

Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”

I have been on the Internet for a full half of my life. I was twelve when I got my first computer. I am days from turning twenty-four.

I more-or-less grew up on the internet. I’ve been part of a variety of online communities. You definitely start to notice some commonalities. I think I’ve pegged the median life of an internet community around three years: after that time, drifting sets in, or conflicts create divisions, or original members have moved on and it feels like the essence of the community went with them, and so on. And there’s often one or two people from the group that you keep contact with over the long run.

I’ve gained so much from my time online. I’ve connected with some amazing people. I’ve made lasting friends. I’ve had space to grow, to explore. Making those connections online as a young teen actually helped me learn to socialize offline (contrary to the panic of traditional-media sorts as new media grows more prominent and the new generations make use of the technology available to them). I still had access to a network of support when I found myself unable to leave the home or socialize in-person. And access to information, the opportunity to learn things that might never have been in my reach otherwise — from sexual education to photography and design concepts to politics and social awareness. And I needn’t go into detail, I think, for most of my readers to understand the value of activism no matter where it happens.

For all the internet has to offer, it can also be a dangerous place. And I’ve watched it happen in a number of communities I was a part of. There are all kinds of people out there, and not all of them with a sense of understanding or respect for boundaries. And it only takes one person, out of hundred or thousands, to change the shape of the community they target.

It can happen in many ways. Some of you might remember that I met my husband online. The community we met in was a close-knit group of friends. Every year we planned a meeting, choosing a place close to some percentage of the group, and would go out together to museums, restaurants, theme parks, local/historical points of interest, and so on. We associated with one another with our real identities, for the most part. As far as we knew. Until one member faked his own death to us, for reasons unknown, and several people who had grown very close to him fell out of the community as a result.

There was another community, a much larger one, where members sorted themselves into sub-groups of friends. And one group was dominated by this particular woman. She made a point to be as inflammatory as possible. She wanted to see drama. And she would target any individual who raised her ire (whether they spoke against her or just happened to be in her way at the moment). Target with harsh words, target with customized insults, target with twisted stories or speculations about the person, designed to exploit their vulnerabilities, displaying knowledge of the target and hir situation — she had done her research — that was as much a personal violation as the infectious lies that she weaved into her attacks.

I’ve seen this happen in multiple communities. These toxic individuals who strongarm their way into prominence. In the beginning they are boisterous but nonthreatening. But their loud, commanding style immediately sets them into a dominant position, no matter how few people know them at first. They use their dominant position to reward people who make a show of flattering them. They make connections early, carefully cultivating supporters, rewarding them with insider status if they show themselves willing to play by the dominator’s rules.

This toxic person begins to gain prominence, in part because sie begins to sew conflict. Sometimes it is subtle, not overt or obviously conflict-seeking, but rather setting hirself up to be wronged, or finding a sensitive issue to exploit. But sometimes it is blatant: outright picking a fight with other people, seeking out enemies. Either way, sie becomes a person that no one can any longer ignore. Sie forces hir way into a place of importance and relevance to all community members; they have to pay attention, because otherwise they might stumble in hir path, or break one of hir rules inadvertantly, and suddenly find themselves in the middle of a shitstorm.

This is the point at which the shape of the community changes: this person is terrorizing the community. Hir supporters are no longer simply part of another sub-group of friends, but now become enforcers. They cannot believe that anyone would speak ill of this person who has treated them so well, and they make sure that anyone who does so is promptly punished. They make sure that no one breaks the dominator’s rules; they pick fights with others in an attempt to prove their loyalty to the dominator.

The really disturbing part is when the big fights break out: anyone who speaks out against this toxic person is swarmed. The toxic person may or may not be personally involved. Sometimes, sie sits back as hir supporters do the work of harassing the dissident, picking at all their flaws, manufacturing them if need be. But sometimes, sie will get involved — seeking this person’s greatest vulnerabilities, and exposing to all observers — knowing that sie does not need to say the nastiest things — someone else will step in and do the dirty work for hir.

And people get the message. It only takes one time, although it may happen well more than just once. People see what the consequences are for speaking out against abuse. And people, quite rightly, would rather protect themselves — even if they feel brave enough to speak up, they can see already that it’s not enough to make it stop. They might have seen a great many people speak out against the abuse, and each of them individually targeted for attack, and the dominator keeping hir place of influence in the aftermath. People may not be happy, anymore, but sie still holds this power.

This is highly damaging in any community. I’ve watched it happen, watched how the dynamics of the community change, observed the consequences of pushback. In one particularly extreme incident, the bully actually researched the real-life identity of an enemy and called around to anyone she could find, including the target’s in-laws and boss, with a fabricated story that was just plausible enough to sew seeds of doubt, and the target actually saw consequences at work because of it.

But even when the abuse is confined to the online community, it can have real effect. I’m not a person who believes that the internet is a somehow less-important space than physical proximity. We are all real people, and we are having real interactions and making real connections, medium regardless. Harmful behavior is harmful behavior, no matter how it is facilitated. And abuse is no less abuse because the abuser isn’t sitting in front of you.

To the contrary: the invasion of space, the assault on a person’s autonomy and integrity, the violation of a person’s freedom of association, are just as real when they happen over a data line. These spaces are important. They might be the only space you can interact with distant friends. They might be the only space you can interact at all, because you are dealing with disability or poverty that makes leaving the house (or bed) and socializing in person difficult or impossible. (Which is why it’s frustrating when people dismiss online spaces as somehow not-as-real or not-as-important.)

When I’m part of a community that houses one of these bullies, I live in fear of the person ever being clued in to my existence, knowing that I could not handle being targeted like that. I have had to leave communities I cared deeply about because I couldn’t keep subjecting myself to those conditions. I have had to break connections with people I cared deeply about because they had some connection to the abuser.

And not just with online friends.

After I moved to Pittsburgh three years ago, I lost contact with every friend I had in California, my closest, deepest soul-mates (in a BFF sense). You see, my mother started stalking me online, seeking out every social media account she could find, invading every space she could find me in. So I left them. All of them. For two straight years I never logged in to my Myspace or Facebook accounts because she would be able to see that I had; certainly I couldn’t have interacted with anybody on them because she would find out. The friends whose emails I didn’t have before, I lost contact with. The friends whose other contact information I did have were the ones in my home-town social circle — the social circle my mother had infiltrated. So now, 2500 miles away in a place I’d never lived, knowing no one but my husband and his immediate family, I was completely isolated from the only support system I had.

Abuse has real ramifications. On real people. No matter where it is carried out.

When it comes to online spaces, some people may not see much of a problem. It doesn’t feel threatening to them. Annoying, maybe. But not threatening. And they don’t see why people can’t just ignore it. It’s not that hard to get past, for them.

But there are some people who can’t just ignore it. People who have been through this before. People who have been primed by previous abusers, primed to respond to certain tactics. For these people, even if they are not the center of a conflict, just being exposed to those same dynamics again can be incredibly harmful. It might not be the same person, the same place, the same situation — but the same patterns are playing out, and it’s not just that you have flash-backs to previous events; it’s the way you return to the state of mind you were in during the previous abuse, the way your patterns of thought go back to how they were then, the way you react to things restored to its previous setting. You might find yourself becoming highly self-critical, questioning your own experience of things, doubting your knowledge of yourself and what happened. You might find the same problems with self-loathing come rushing back. You might be wondering whether you really deserve it. You might start to see yourself as a burden again, highly aware of all the ways you drag other people down.

You can’t just ignore it away. You can’t just Think Positive your way out of it. You can’t just tell yourself that all these thoughts are untrue; no matter how well you understand something intellectually, there is something about the human psyche that still follows those same self-destructive emotional patterns when exposed to the same kind of situation that originally set them in place.

Just because you don’t actually feel like the community bully is going to find you at your workplace doesn’t mean hir actions aren’t having real effect on you — no matter how much you fight it.

Survivors of abuse are everywhere. And they are not always known as such. They are often invisible. And the consequences they suffer are not always apparent to outside observers.

What disturbs me as I watch this play out in yet another community I care about deeply is that this community is different. It’s not just about making friends or sharpening your debate skills or sharing memes with each other. This is a community with a purpose, and it has real effect. Real change is happening because of the conversations that we have with one another, puzzling out the direction of a movement, examining systems and learning how to change them, working with one another to advance the theory behind the movement, to find relevance, to find need, and to fill it. A lot of people have been introduced to concepts they might never have encountered without a thriving network of communities dedicated to common purposes. And, as a believer in bottom-up change, I fully believe that the influence of this community will spread.

And maybe it’s naive of me to expect better, but I rather do expect that groups of people centered around advocacy and activism would have some measure of awareness of abuse, how it works, how devastating it can be to the person/people targeted. I would definitely expect many of these communities to know that the abuser has often made sure to become in some way valuable or indispensable to the larger community, doing good things for other people, even as they do such harm to others. How often do people rally around an accused rapist and close in on the accuser, because they know what a good person the accused is and what good they are doing in [other area], so there’s no way they could be capable of something so heinous, and anybody who suggests something so patently ridiculous must have some sort of insidious motive…

You will see similar narratives play out in online communities — often without even the precept of an accusation. It is not the target who (publicly) initiates the conflict, in this case — the target may have been minding hir own business — but the abuser. All the abuser needs is a slightly modified version of reality — just plausible enough that supporters/enforcers and passers-by don’t bother to check for accuracy, but instead go on the abuser’s version of events — but just twisted enough to set up the target for harassment and humiliation, just something enough to suggest salacious details (real or manufactured) that a motivated supporter might dig up about the target, and just set up in such a way that any way the target might defend hirself would only create more embarrassment or incite escalation.

This is called manipulation.

What is most frustrating is that there are people who know that something is wrong here, people who are seeing red flags, but rather than choosing to back out of the whole conflict, they step in to question the target. Because maybe there are personal issues between the abuser and the target, they figure, but on the merits (as posited by the abuser), doesn’t the bully have a point? And then they unquestioningly accept the abuser’s terms of engagement, imposing those terms on the larger conversation, forcing the target to either engage on the abuser’s terms or not at all — which, of course, sets the target up for failure. And the conversation may not have proceeded on the abuser’s terms without the intervener’s assistance.

This is called enabling.

These people are willingly being used as tools. They are allowing themselves to be manipulated, for what reason I can only guess: sometimes, for the approval of the dominating person, for the points they win by staying on the right side of the conflict (“right” as in most dominant), or maybe they’ve had conflict with the target before too. Maybe there are other reasons, reasons I don’t understand right now, that aren’t as malignant in nature, even as they have a negative effect.

But it’s especially awful, when it happens that way — because it hurts so much worse coming from the innocent bystander, the person who had previously been a friend — it cuts so much deeper when it is coming from a person who generally acts in good faith, a person who generally acts with respect.

The target, then, is isolated: the people who see what is going on are too afraid to speak up, knowing that the consequences of showing any support for the target are having some of that scrutiny diverted their way. And it is understandable to protect oneself in that case, especially when past incidents have shown that even a great many people speaking up against the abuse cannot break down the power structure that the abuser has built.

And that is why the enforcers (whether willing or oblivious) are so frustrating. Because they are the ones who are defending that power structure. They are the ones who are making sure that even when the vast majority of the community is unhappy with the state of things, they cannot wrest back control of their space. The abuser, by hirself, could not win against an entire community that is sick and tired of hir actions. But when the abuser “has a point” — “does so much good” — when people would rather stay willfully ignorant to the structure they are reinforcing as they use it for their own benefit, because any position of influence is worth it because they would use it for good things –

And the system forges on.

How many voices have been silenced by this system we so casually reinforce?

How many people have been intimidated out of writing, building, working within the community?

The answer isn’t zero.

I’ve watched enough of these conflicts now to have lost count of the people who did speak up, who bore the consequences of doing so, and whose voices disappeared entirely after the storm passed. I’ve lost count of the people who became targets, and the campaign was a success, the person humiliated, and even when attention turned elsewhere they were too scared, too depressed or burned out, questioning whether they could ever contribute anything valuable — their voices quieted.

And there is no way to count the people who were observing silently, who might have joined the community, adding their voice to the conversation, contributing valuable perspectives and insights — no matter how small their circle of influence — who were too scared, having witnessed what can happen if they inadvertently step in the path of the wrong person — who decided it wasn’t worth the risk.

Again, this is devastating in any community. But particularly in this one — a community where we want people to use their voices — we want a diversity of perspective — we want a high degree of participation. This is a community where the entire point is to listen to these voices, and to engage with one another, to build upon each other — and no matter how small the voice, no matter how unknown the contribution — it still matters. A great diversity of small contributions makes a stronger, more stable foundation for a movement.

Every little bit is just as important as the next. And the higher degree of participation you have within a group — whatever commonality they share — the more likely the movement is to actually better their position in society, in life. The more you discourage participation, the more the movement becomes dominated by a few competing leaders. And the fewer people participating, the less relevant the movement becomes, for lack of a diversity of knowledge and perspective. The fewer people participating, the more the faults of the few leaders matter. And the more likely the movement is to eat itself inside out.

I don’t trust that it will make much of a difference, just me writing on my little blog. Especially when I am too fucking scared to name names. Especially when I already spent two days suicidal last week, and still don’t know whether I feel up to meaningful participation in this community going forward. Especially if that scrutiny comes back. I’m being fairly risky, writing about it outright like this. And it’s my own safety that I’m risking. And if I find myself targeted again, I might have to pull out of yet another community because of it.

But I will mourn this one a fair bit more. Because it’s more than friends lost.

It’s purpose.

I’ve had a handful of names throughout my life.

I was born “The [Mom's Maiden Name] Girl.” My mother had not yet picked out a first name for me. She was living in a hole-in-the-wall shack in a poorer town in agricultural central California — it was where she ended up after my father kicked her out upon discovering her pregnancy. Get an abortion or hit the road, he said. I knew this as a child, but it wasn’t until I grew older that my mother also informed me that he was threatening to beat her, to punch and stomp on her stomach to forcibly terminate the pregnancy. He tried to send her out with no belongings in a scrap car — which was to get her from her then-home on the northern border of Oregon to her adult sons’ home in central California. That’s over 900 miles. She was 43 years old and not in the best of health. My oldest brother — something of a giant — had to gather some friends to physically threaten my father for him to make sure that she was able to make the trip safely.

I’ve never had a moment’s contact with him. My mother claims that when I was around six years old, he called her, having “dropped by” and wanted to take me out for some ice cream with his new girlfriend (with whom he had been involved during the short months my mother was married to him). Fearing for my safe return, she refused. And never heard from him again.

During my first months, my adult sister lived with us — she has told me stories of having to brush cockroaches off of me while I slept. And it wouldn’t be until I entered adolescence that my mother and I settled down in a permanent home: before that, there was not one residence I was able to stay for more than a single year’s time; we hopped around looking for the lowest rents, and spent time living in spare rooms in each of my adult brothers’ homes (three times with one, once with the other).

When I was five years old, my mother married a long-time family friend. When she did so, he legally adopted me, claiming to be my father and being added to my birth certificate as such — whether my mother just went along with this or actively sought it for reasons of future security, I don’t know. Regardless, my name at the time changed from [Mom's Maiden Name] to [This Man's Name].

A little less than a year later, after struggling with him over finances — he wanted her to continue working to support his retirement, with no support for either her nor I — she divorced him. And there, a problem cropped up: in order to get my name changed back to my birth name, she would have to go to court to prove that he was not, in fact, my biological father, and have him removed from my birth certificate. As a newly single mother, she did not have the resources to take on that task. So, even after the divorce was finalized, I remained [This Man's Name] — and she kept that name as well in the interests of having the same name as her daughter.

And that name remained mine for the rest of my childhood, adolescence and early adult life. I hated it. I hated the sound of it, I hated the man it came from, I hated the way he had treated her, I hated the way we were stuck carrying his family name despite having no ties to this family whatsoever.

Ever since I can remember, I have been very eager to get rid of that name.

And ever since I remember, I have been wholly uninterested in weddings and traditional family life. I had no interest in boys or girls as a teenager. I never dreamed about “my day,” about dresses and flowers and music, about honeymoons and housewifery.

Part of that, especially as I grew older, was that I had a distinct sense of my undesirability. I wasn’t interested in anyone else because I thought no one else would be interested in me. As I grew more aware of my health and struggled with my increasing limitations, I never even entertained the idea that anyone could ever be interested in me — not to kiss me, not to hold my hand while we walked through the mall, not to cuddle, not to call me “girlfriend” or “go steady,” not to live with me, not to propose to me and certainly not to legally commit to be stuck with me for the rest of their life. Who the hell would want that? I was a burden; my health was growing worse; they would have to help take care of me, and I wouldn’t be able to contribute to the household enough to count as an equal. So obviously, I wasn’t on the market. It never even got as far as whether or not I wanted to be: it was simply a matter-of-fact acknowledgement of a reality that would never change, and thus there was no point wasting energy trying to change it.

All this is to say that I wasn’t dreaming of changing my name as part and parcel of the supposedly-universal little girl’s dreams of wearing white and being pampered and fawned over and having pretty pictures taken in rolling green fields. I never had those dreams. I just really fucking hated that name.

So before changing my name as part of an adult relationship ever became a possibility, I had three names to contend with. My father’s name (which I’ve never officially carried), my mother’s maiden name, and that other man’s name.

And not a single one of them was a name I wanted any part of.

My father’s name? Sounded pretty cool phonetically, but it was the name of a man who threatened to beat my mother, cheated on her pretty openly during their short relationship, had some pretty serious class bigotry going on, and was by all accounts — including those of his other children, the half-siblings who wanted nothing to do with me — a complete asshole. Yes: there’s a name I want to adopt!

My siblings (on my mother’s side) actually shared a completely different name — they were from a different father — my mother’s severely abusive first husband who thankfully died in a motorcycle crash, and every single member of my family is convinced it was for the better.

And then there’s my mother’s maiden name. The name shared by my aunt and uncle and family up in Oregon, the name I was born with, the name I went by for my first five years of life.

It doesn’t matter. I don’t fucking want it.

I want nothing to do with any of those names. I grew up in a severely emotionally controlling and manipulative family and experienced abuse to the point that I am just being introduced to the idea that I may have PTSD by my counselor. (I protested, and she said “OK, well, we don’t have to put a name to it, but…”) I have pretty bad dissociative issues I am only just beginning to explore; I escaped with moderate to severe anxiety disorder and panic attacks that don’t qualify as panic disorder only because instead of being random, they are triggered by contact with my family. I fit every other qualification.

I was stuck at home with a mother who afforded me no space to develop an individual self, unable to make it on my own away from her because of my disability. I couldn’t work, couldn’t afford rent, couldn’t live independently. I pushed myself to return to college earlier than I should have — after I dropped out the first time and spent months housebound — cutting short my recovery time, just to get away from her. I lived for a year on Social Security disability (after I was approved), $7500 in needs-based college grants and several thousand more in student loans before everything started to run out — money, my ability to continue school and maintain grades high enough in a busy enough schedule to qualify for further student aid — and I couldn’t stay out on my own anymore.

And then I spent a very painful and traumatic six months stuck in close contact with an abusive mother who was keenly aware that she was losing her grip on me and escalated the abuse accordingly.

And then? I was able to move 2500 miles the hell away from all that shit to live with… a man. Whom I married. And whose name I took.

I was able to move to a place I wanted to move to, to live with this amazing person I wanted to live with, who loved me dearly, who was respectful and affectionate and treated me like a whole person, a person of my own whom he just so happened to be enamored with, whose family was warm and welcoming and accepting and easy to be around…

I was able to choose where I wanted to be, who I wanted to be there with, who I wanted to be, what sort of life I wanted to live…

I chose the family I wanted to be a part of. I built the life I wanted to live. It’s a life I just so happen to love deeply, a life that has given me so much more opportunity than I ever had on the other side of this country, thanks to the person I chose to build it with.

That person? Is a man.

I took his name.

I don’t think that’s a capitulation to patriarchy. I don’t think that’s a compromise of my feminism. I think that is a demonstration of my feminism.

I have a name now. It is mine.

the scene: mid-morning on a wednesday. the north end of the ground floor of our building. i sit at my open-cubicle desk next to the scan/print station, barcoding applications. my coworker stands at the station, waiting for a fax to come through before she can use the copy machine.

both are silent. the sky is darkly overcast and the climate system whirrs loudly.

after several moments, she declares: “i wish…”

pause.

“i wish i could use the system.”

i look up.

at the moment, our intranet is down. i am assuming she means “i wish i could do my work.” but she continues.

“i wish i could get something. everybody seems to get something out of it. when we’re just trying to get by on our own, you know. they get something for free. i wish i could get something.”

and now i know what she’s talking about. i take a breath and try to maintain a conversational tone.

“i actually grew up on welfare. and it’s pretty hard. there’s so much you have to keep up with. it’s much better when you can make it on your own and don’t need that help.”

pause.

“when i was little, we actually got our food from food banks. you know, stale cheese and cans of evaporated milk, that was all we had. it was more trouble. i like it much better when i can do things for myself and don’t have to rely on that stuff. struggling with all that. it’s not easy at all.”

silence.

her copies are finished and she returns to her desk. i go back to my applications.

***

edited to add: if you want more on the things poor people are put through to get a few crumbs worth of help, read this old post from kactus, a poor single disabled mother whose presence on the internet I miss very much. um… in fact (looking at my comment there), it looks like it was but a few days before I started this blog!

(Cross-posted at FWD.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

I am going back to tag all my photos. I have wanted to get my collection organized for over a year now.

Of course, this means going back through all my photos before I moved out here, too. From March 2004 through December 2006. It felt much longer than it seems, typed out like that. Feeling trapped. Controlled. Cut in half, the only person who loved me 2500 miles away. My friends, so loving, but my social circle so wrapped up with my family that I have not been able to keep up those beautiful relationships since the move.

It hurts. The good things hurt. The bad things aren’t documented, with few exceptions (me staring glassy-eyed at the camera with a distressed smile, forced to pose with my family at the church event celebrating my class’ graduation, where my family threw a fit because I spent some of my time with my friends and their families, and they felt betrayed). But I remember them immediately when I see the smiles. Because the happiness was never unfettered. The happiness was desparate, tenuous, fragile, aware of its own brevity. There was no such thing as a moment of happiness that was free from all the pain. It was all baked together, inseparable, each a part of the other. I could never have happiness without knowing it would bring even worse pain as soon as it ended, and knowing how soon it was set to end…

And now here I am, cut off from the life I had, no contact with anyone except the occasional email to my mother (though she seeks me out daily, by email, calls to my husband’s phone, invitations to myspace and twitter and facebook, finding my accounts by association with my friends) living a totally different life, much calmer, freer, and finally now able to feel happiness… unguarded.

I had to have my shield, then, and it had to be strong, and always ready. My self, the person I truly was, was holed up in a fortress deep inside, very small, restricted, not allowed to explore, grow; too dangerous. I was saving it, unable to nurture it, but protecting it for the day when I might be free from the constant assault, safe.

Here I am. I don’t need a shield here. I have, in fact, grown accustomed to living  without the weight of the armor, always protecting. Grown accustomed to just living, just doing, just being what I am, and enjoying it.

But whenever I dip into my past, I find that I am vulnerable again. I have to fumble for that shield. Shit, I forgot it. Shit shit shit shit. Overwhelmed, crushed under the weight of everything rushing back.

I lose touch with the world I sit in, right now, in this chair with the windows open and streaming in light and noise from outside, the locusts foreign to me when I moved here, my cat sleeping comfortably on the floor, the kitchen in a mess as we reorganize where we keep the spices and the dishes. The kitchen where I can cook, now, without fear that I will be yelled at, guilt-tripped, physically pushed aside, my work taken over, can’t even put a pot of water on to boil without it being changed, always wrong, never able to do anything and have it just be mine.

This kitchen now, where I enter, I pour my tea from my refrigerator, I put my pot of water on to boil, I take my box of pasta down from the cabinet over the sink, I clear the dishes out of the drainer and put them away. And that’s that. No one behind me to move everything I set down, chastise me, ensure I am never allowed to do a single, small, petty little thing for myself.

I am caught up in the old kitchen. Where my hand is grabbed as I fry up the pork for tacos, held, and another hand does the same thing I was just doing, while telling me that I was doing it all wrong. Where I find my pot of water mysteriously moved, set on different heat, on a different burner, after having been yelled at from the living room about doing it wrong. The laundry in the back, where I am instructed on how to operate the washer as I try to set a load of clothes to wash, even though I have capably done my own laundry many times, I am assumed to never know, never understand, never be capable, never be self-reliant, always someone else’s burdensome extension.

Going through these pictures of the good moments, the fun, the smiles and sun streaming, this is where I am, caught up, again guarded.

And suddenly I start, and wake up. And realize that the person I am waiting for to come home is not my mother, but my husband. That it has been a year since I have seen my mother, and a year and a half before that. I have not set foot in California in two and a half years — now the same amount of time between when I finally got my first digital camera and when I packed all my belongings in flimsy cardboard with layers of packing tape and stepped on to my much-anticipated one way flight from LAX to PIT.

I am sitting here as the locusts make their locust-noises, I hear the rhythmic hum of the ceiling fan in the downstairs neighbors’ bedroom, I see my cat sleeping peacefully on the unvacuumed carpet and the bucket of cleaning supplies ahead of me. I realize that I have a bed not fifteen feet from where I sit, a nice queen size bed with a memory foam topper, in which I sleep every night, happy and secure, with my husband. Happy. And secure. Unguarded.

It’s a hard transition.

Written originally for my stint at Feministe at the beginning of July; been working on it bit by bit ever since, but suddenly it has become topical again.

Part I: The Personal

Note: I’m going somewhere with this. Please keep your mind open as you read, because I will be coming back in Part II with a concept that may seem to conflict with your initial reading of Part I. Thanks.

Understanding my background is essential to understanding my understanding of these things. And so we go.

My brothers and sister, between them, share two diagnoses of bipolar disorder, one of schizophrenia, two of those with psychosis, and all three have severe depression and/or generalized anxiety disorder. That is only what has been diagnosed by mental health professionals — D* was only diagnosed by way of being taken to prison and has not seen a doctor otherwise in decades.

My mother never saw a mental health professional and never will, but she shares most of the symptoms my siblings display, and my own mental health professionals have agreed with me that if there is a diagnosis to give her (with all requisite caveats), it would be borderline personality disorder.

1.

My brother D* had the worst situation of the family. He was the first to go to jail: when he was taken to court for some sort of licensing issue, he refused to give his name. Wouldn’t speak. And so they put him in jail. And he stayed there for eight months before relenting so that he could just go home.

How long would you stay in jail for a principle?

Around the corner, about a quarter mile down the street, there is a small plot of land across from the rows of public housing, next to the community center. It was just untended grass until several months ago, in the springtime, when small squares were outlined with wooden planks, and the ground inside filled with soil. Then the shed was built, and the fence was put up.

Welcome to the neighborhood garden.

Community gardens are a great way to make use of space — to grow your own vegetables, herbs and so forth — to feed your family, save some money — and to develop a connection with the lad you live on — to have a hand in creation, nature, sustenance.

I was across from the fields, growing up, but in a different way. Most of my elementary classmates were children of undocumented field workers. The food that makes it onto your plate by way of your local supermarket has a good chance of being tended and harvested by these families.

They were not picking grapes and lemons and walnuts for pleasure, for self-realization. They were not feeding their families with this food. Their work was for the rest of the world.

They were connected with the earth, for sure. But it was not quite the same connection as that developed by participants in community gardens.

Many of these gardens serve underprivileged, disadvantaged communities — as this one — who are struggling to keep their families well fed and provided for. But it strikes me every time I sit to think about it: these two different ways of relating to nature are both borne of hardship, of poverty. They are connections forged by the reality of subsistence. They operate in different ways, with different results, but they grow from the same root.

I smile whenever I pass this garden. It is thriving, providing nutrition for poor families and a bright site of beauty in the middle of a run-down area.

But I wonder whether we could ever come up with a more holistic way of dealing with these issues. One which does not leave some families chained to the earth in the reality of capitalistic agriculture, and others disconnected from it in the reality of modernity and urbanism.

This post is in two parts, the same story, told with different but parallel focus.

***

Once my endometriosis was diagnosed, my gynecologist said that my best choice for treatment was an injection called Lupron Depot.

Because the endometriosis small and diffuse, surgery was not an option — there were no large masses that could simply be cut out — rather, it was more like a thin layer covering everything in spots.

Lupron is a gonadotropin-releasing hormone antagonist; it is used for a variety of things including chemical castration of male sex offenders. In women with certain reproductive conditions, it works by stopping the production of the hormone estrogen in the body. Estrogen is what tells the endometrium to grow, and therefore what inflames the endometrial implants outside the uterus. Therefore, by stopping the production of estrogen for a set time — six months; twelve if the first six were unsuccessful — you would hope to shrink the implants that are already there. Essentially, what you are doing is inducing a six-month menopause.

Lupron is not aspirin. It is not a trivial drug. It makes serious changes to your body. Most women do not finish the full six months. I did, and the nurses were genuinely impressed when I came in for my last shot. None of their patients had ever taken a full round before.

And if the pain comes back immediately after stopping — which, in me, it did — they want you to go a second six-month round. (That is the limit due to risk of developing osteoporosis.)

Honestly — I kind of want to know the women who actually made it through twelve months of that drug, if my nurses had never seen anyone make it the first six.

It was not a fun six months. At all. (This is how it felt in real time.) I earned six months without any periods (I would have gone through one or two in that time on my birth control, so it wasn’t a huge benefit) and a couple months’ reprieve from the pain. In exchange, I went through numerous side effects, from the awful spasms, dizziness, fainting and tremors to considerable hair loss to hot flashes and uncontrollable sweating to sudden overwhelming nausea to weight gain.

And now, ten months after stopping the treatment? I wish I’d never done it.

I didn’t start birth control until age 19. Until that time, I was letting my body go through its natural cycle. Which must have been brimming with estrogen, because the pain was bad. It kept me out of school at least 1-2 days a month for period pain alone (before we even consider my fibromyalgia). It is by far the worst pain I have ever experienced — even with the awful migraines I get where, literally, a twitch (anywhere) causes so much pain throughout the body that I want to scream, but the movement and force required to make any sound at all would hurt just as much — so I stay stiff and silent and suffer until there’s enough of a window to down some pain meds.

The cramps I get on my “natural” (no hormonal medications) period — the pain comes in waves, crashing over me, exploding through every ligament and nerve in my body, rolling up and down the length of my torso. I spent many days in the fetal position on the floor of the bathroom, wishing I could just cease to exist right then and there, in too much pain for the thoughts to ever get as far as “movement to make it happen.”

And, well, suffice to say it affected the bathroom cycle too. I’ll leave it at that.

The pain, even in between cramps, is bad enough that I could not sit upright for more than maybe an hour’s total time throughout the entire first day — I was either in bed, on the couch, on the floor, or lying down in a chair in front of the computer. And the rest of the week, it was difficult to stand upright and walk — I needed to reach out a lot for balance; I couldn’t straighten my back it hurt too bad. There was this intense heavy pain in the muscles of my upper legs. And I needed heat — bad — any cold or dampness felt like my blood was turning to acid and eating me inside out. I reveled in the sun; I couldn’t leave the house without heating pads; I sat down under the hot hot water in the shower. Wintertime (which, in central California, got as low as the 40s during the day, but was damp and moist with fog) was excruciating.

I went through all of this approximately one week (or a little more) out of every month in my adolescent life. And this is all ignoring the actual period.

When I got on birth control — after a brief period on a tricyclic medication (Ortho Tri-Cyclin Lo), which made me break out in painful cystic acne and left me irritable enough that a fly could be cause for an angry breakdown — things settled down somewhat — especially after a kind gynecologist prescribed a low-dose monocyclic pill (Mircette) continuously; that is, skip the placebo week in the pack, taking four packs in a row before allowing that period week. That meant one period every three months, and a lightened period at that — it was still very painful, but not suicidal-thought-inducing painful like it was “naturally.” And during the twelve weeks on the hormones, I was mostly free of the continual lower abdomen/pelvic area pain that I suffered even between periods on my “natural” cycle.

I stayed like this until the beginning of last year, when the lower back/pelvic pain set in to stay, leading to the diagnosis of endometriosis and the Lupron treatment.

And after the Lupron, now — back on that same low-dose pill, taken continuously — I am going through pain that is far closer to my “natural” cycle pain than to the pain I went through for the three years prior to the Lupron. I am having cramps that sometimes keep me from being able to move to get out of bed in the morning and sometimes hurt so bad I have to get up because it hurts too much lying down. The back pain continues; my methods of treatment are definitely helping considerably, but the pain is more persistent and more severe than it was last year. My, um, “bathroom cycle” — which was relieved of pain completely during the three pre-Lupron birth control years — has returned to the cycle I had before I ever started hormone treatment. The only thing that hasn’t returned is that lead-like pain in my leg muscles, that acid-blood feeling.

And it is frustrating me. I wish I had never started the Lupron in the first place. I read up on it before agreeing to take it, and I knew there were a lot of horror stories and a lot of women really, really hated it. But what other treatment did I have? this seemed like something that — even if it was difficult during — would make a difference in the long run. So I did it, and I stuck it out, because how would I know what good it could do if I quit?

I don’t know if maybe it’s because I spent that six months estrogen-free, and now I am on a pill which, though low-dose, does contain estrogen — so suddenly my body is feeling an increase in estrogen, thereby causing more inflammation and therefore more pain. I have no idea; I do my research but I am still a layperson. But there can be no argument that my situation is considerably worse than it was before I went through the Lupron. And it’s been this way for ten months. This is no mere readjustment.

***

Next post: on the visible physical changes, body-image adjustment and dysmorphia.

[I am having with the WordPress backend and cannot paste the full post here. Once I get WP upgraded I'll put the post here as well. Visit Feministe to see the post for now.]