A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier.

What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

Next: A Reintroduction (Part 2 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

I’ve been through this before.

I’ve lived in closeness with people I deeply feared. I could never show my fear, because the very reason I feared them was their propensity to take advantage of any weakness shown, to weaponize it against the person, and to intimidate the rest of the family, group, community into harassing that person as well. I had to be aware at all times. I had to watch everything I said and did, and everything I didn’t say or do. I had to know the rules down to the letter and follow them without fail. And I had to know that even doing all of that, I would still be a target at some point, for the simple reason that the person had to have a target at all times, and I was within their line of sight. At some point, for some impossible-to-predit pretext, there would be a big blowup, and I would be in the center of it. Wishing I could shrink so far they couldn’t see me, but every effort to shrink away only escalating the harassment.

It’s a familiar situation.

When I see it play out in this community, it hurts. Because there are several common holdings in this community: seek the truth. Support the underdog. Believe people who say they have been wronged.

Unfortunately, the community develops in such a way that people start manipulating that.

And there are bystanders who will jump on the wagon, and use you as a way to improve their Good Ally cred. The actual issues aren’t of importance, but the chance to make a name for yourself on the backs of someone else.

And I cannot sit here and play the familiar game. The one where both sides yell to everyone listening: THIS IS HOW SIE WRONGED ME. And the other side yells back: THIS IS WHAT SIE DID WRONG. Pay attention to hir, not me! It’s all hir fault!

I don’t like doing  that, especially here, because I know that the community as a whole cannot be trusted not to take “this person did something wrong” and take parts of that person’s identity and use it against them. I do not trust the community not to bring out racist shit toward a person of color. I do not trust the community not to start holding that person to standards they cannot meet because they are working three jobs to make ends meet or they have a disability that makes constant engagement difficult. I have watched this community devour people, destroy destroy destroy, because they cannot work on Internet Time, where responses must be instant. I have watched this community take  things from the other person’s past and weaponize them in ways that just turn ugly.

I just don’t like that game.

So I don’t want to play it.

That means that I have to sit here, while someone is all over the place attacking me or people I care about, knowing part of the story, but not wanting to tell it. Not wanting to shout it. Not wanting this to turn into me-vs-you, us-vs-them. Not wanting to watch, as I have watched before, people intentionally look for the other person’s weakest spots and try to hurt them. Because they did something wrong.

I don’t want to be responsible for that shit.

What that means is that I have to sit here and take it. Let the other person raise a fuss. Depending on the person, let them twist the truth so hard it breaks under the pressure. Let them make up wholesale bullshit lies about me and those close to me. Lies that are conveniently constructed to play into the community’s sore spots. I have to sit here and let them try to destroy me, destroy people around me, destroy anyone who doesn’t immediately denounce me.

My reputation takes a hit, and I have to take it, even if it’s based on claimed events that never happened.

People believe things about me that are nowhere near true.

And people never get a chance to see the things the other person has been doing behind the scenes. The things they’ve been saying, the people they’ve been sending against me, the absolutely prejudiced things they do where they know no one else can see. While putting on a public front as the only true friend to my type of people.

How many different dramas have I had to sit through, watch them play out, sit on these things, never reveal them, because I really believe it would be unethical to do so.

It’s more ethical to sit here and take a beating than to just push back. Not beat back, push back.

I’d rather take the beating.

But damn, it hurts.

(Cross-posted to FWD/Forward. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom.

***

The office I work at is lit by fluorescent lamps, which can trigger migraines for me, but the light level was reasonable enough that it wasn’t a problem up until that point. Last time the maintenance guy came through to replace the select few old-and-broken lights, I asked him to twist the bulbs above my desk so that they would dim or turn off, and he did so, and I was extremely happy. The lights were ok when they were on, but the new lights were already making my head hurt just having been replaced a couple dozen feet away. Now, my desk was a safe and comfortable space and I could work without that particular disruption.

Around Christmas, the safety coordinator in my office — who seems to dislike me, demonstrated well before this incident, and repeatedly since — took up a new pet project: replacing the lights. The safety coordinator decided that every single tube in the office needed to be replaced with brand new tubes at double the former intensity. And not only that: previously there had been two tubes per light; now, she wanted to fill all four tubes, in every single light, with that brand new double-intensity fluorescent lamp.

I arrived at work the day after the lights were put in, and I lasted five minutes at my desk before I had to stumble away. I was having an asthma attack (and I cannot use inhalers); my stomach was churning violently; my eyes were throbbing, and I actually lost vision altogether for a couple minutes — and my field of vision was covered in multi-colored spots for hours afterward, and my eyes were blurry and out of focus — I could not make my eyes focus, anywhere, not to read the screen in front of me or the clock on the opposite wall.

Five minutes. The time it took to boot my computer and email my supply person asking if my lights could be changed.

The answer was no, which marked the start of a months-long ordeal with Human Resources (which consists of three people, one of whom is the safety coordinator whose pet project this was in the first place). They told me that if I wanted it resolved quickly I shouldn’t file an ADA accommodation request, and then stonewalled me and eventually told me the only way to resolve it was to file an ADA. They told me it would be useless to make any change because “what if she moves somewhere else” (um, I work a specific program, do not have the job title to work anything else, and this program has never been anywhere other than this area of the building). Eventually I found out that at the safety meeting that preceded this decision, my supply person (who is an assistant back in the administration/HR area) raised her hand and specifically said, “Amanda would prefer to have her lights turned off, because it aggravates her migraines” — remembering when I had requested this of the maintenance man — and one of the union stewards, who knows I am disabled with a chronic pain condition, replied, “No, we can’t do that, we have to treat everybody exactly the same. No one can be treated differently.”

I had taken the initiative to move myself to the one desk where the lights were burning out almost immediately — checking messages on my phone every ten minutes and continuing to do the same work I had done before. On the day I left for two hours for a doctor’s appointment, HR chose that time to hold a meeting with my supervisor to relay the order that I return to my normal desk, as it was, no change to the lighting situation — and I was advised that refusing a direct order was a fireable offense.

I was “allowed” to wear sunglasses in the office, which merely delayed the onset of my migraine by a couple hours (primarily the eye strain from trying to read and operate a computer screen with sunglasses on, secondarily the light itself); I was leaving work early more often than not. The safety coordinator at one point came over to sit down at my desk and ask me — gesturing with her hands held over her brow, parallel to the ground — “Can’t you wear one of those — what are they called? –” Sigh. “Visors?” “Yes, that!” No, it wouldn’t, because the light was glaring off my desk, the windows, the file cabinets, the walls — blocking one direction of light in that situation would be like trying to take a shower with an eyedropper. She was unsatisfied with this answer and walked away. (Of course, if I had tried to use “one of those” before she came up with that bright idea, she probably would have called another meeting to order me to stop violating the dress code.)

My specific accommodation request — to simply twist the bulbs so that the lights above my desk were off — was eventually denied because nonharmful lighting would be a danger to the workers around me (all five of them hated those lights and had complained to HR about them as well!) — the difference between the old and new lights was like the difference between a sunny summer’s day and the surface of the sun; it’s already very brightly lit. They decided to order a cheap full-spectrum filter — and tsk to me that they would have to see if it was in their budget — that specifically advertised that it only reduced the light’s brightness by some trivial amount. I protested to them repeatedly that it was the brightness that was the problem, not the color of the light, but they would not allow any change to the brightness. Safety concern. Turned out I was still getting migraines, so they gave in to my tired request to order the gradient sleeve filters that were listed immediately under the original filters they had bought. And that worked. By… reducing the lights much as if they had been twisted off. As I requested in the first place. Which would have cost precisely nothing.

Well, it’s worked well enough since then. And since, ahem, the ballast was broken on a couple sides trying to install four sleeves on two sets — the lights are connected such that if one light goes out, its companion on the opposite side does too. So that took care of four lights for me. Of the four remaining, the gradient sleeve is turned to provide an amount of light I am happy with. And all is well.

At least, it remains well when my desk is of any use to me. But when my motherboard blows a couple capacitors and my computer is out for the count during one of the busiest weeks in our program, and I’m already marked as a Troublemaker by HR and thus do not want to go around swapping computers by myself, all of a sudden I’m right back in the same situation I started. Now a few of the new bulbs have dimmed with time, but it’s all shaking my stable footing in terms of pain.

My coworker offers me her desk, because she is spending most of her time upstairs. It is the desk next to mine, across the aisle. The desk in the corner of the building, with twice as many windows, and fluorescent lights that have not dimmed a bit, remaining significantly brighter than any in this quarter of the building.

I take it for the first afternoon, when my computer has just died, because it’s the only space available. And I pay for it. Because I’m seeing spots again by the end of the workday. My stomach is doing acrobatics and I’m afraid I’m going to vomit all night. It’s hard to breath, hard to think, hard to focus my eyes. Sensory overload, feel like I’m going to explode.

This was early in the week. I spend the next couple days parked at someone else’s desk, until that person comes back to work and I am deskless again. My coworker offers me her desk again, and I decline, saying “I can’t sit there because of the lights.” Oh, okay, she says.

Until the next day, Friday, the busiest day, when I am rushing around coordinating things for a dozen different people and being yelled at by clients all the way — using the maddeningly slow and unresponsive computer connected to the printer/scanner/fax equipment in the station next to my home desk. Seeing my frustration with this instability, my coworker again offers her desk. And again I decline. And this time, she throws in: “Well, if you change your mind, you can have it!” In her sweet, quiet voice, and she heads upstairs again.

Because this pain is really ultimately a personal decision.

This is the person who, sitting at that station computer scanning, asked me sweetly if I could turn my desk fan so it would cover her too (the building’s climate is very poorly controlled) — and I agree, because the air will still hit me and it is, seriously, really hot in here — but finishes her request with a laugh, “since I can’t have any light here.”

Sweet and quiet.

Sometimes, the people who are going to hurt you are easy to identify. Like my safety coordinator, who has tattled over the most trivial and frankly inaccurate things to my supervisor (who knows she is full of shit).

Sometimes, they aren’t.

***

I can never trust anyone to understand.

This knowledge always hangs in the back of my mind. It is disturbing, in the sense of creating unrest, destroying stability.

On the other hand, truly accepting it could free me — no more time spend artificially dividing people into categories of “Volatile, Will Probably Hurt Me” (focus all energies on protecting self from these!) and “Safe, Would Not Hurt Me” (so tired from the first category, no energy to protect self on any measure around them) — now I can spend that time and energy centering myself and my needs, thinking about what I really need to protect (from anybody), what I’m ok with people knowing — and even focusing that energy on becoming ok with those facts of my lives, myself…

But the eternal vulnerability can wear on me. Disclosing something one time means being vulnerable forever — the moment of sharing, the interaction may pass, but the knowledge can be used against me at any time. It can come up at any point in the future. Once I make the decision (not that there’s always a choice) to disclose something, I let it go forever — the knowledge is free in the hands of the people around me, and I can never take it back.

I could go on a decade-long effort to refocus on invisibility, on passing, on keeping secret — I could purge my social circle, present myself as totally normal and hide anything that might indicate otherwise — and all it takes is one person, saying one thing, to crumble that carefully-built structure in an instant.

The first time anybody knew I was sick — oh hell, people knew before I even got diagnosed at 12 years old! — that shell was cracked, and I never know if, when, it’s going to shatter, burst wide open. In fact, I can probably count on it happening, at some point in my life. Probably the least opportune point when it will cause the most damage, right?

No matter how careful I am, I occupy a precarious position.

It’s hard to accept that there is always going to be a wall there when I make personal connections with the currently nondisabled. Their knowledge can only go so far. They can be friendly and supportive, but they come from a fundamentally different place. And that means that at some point, they will do something potentially hurtful. Not understanding that it is potentially hurtful. Because they can only go on their own experience.

So even with people who might be friends — or at least friendly acquaintances — I have to have that wall. That knowledge of potential hurt. With all the weight it carries.

It’s a price I accept — rather than the price I try to deny, and end up experiencing anyway.

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.”

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at FWD/Forward.)

I am under no obligation to interact with any given individual. Not under any particular circumstances, not to any particular degree and not in any particular manner.

It will not advance my activism to maintain the public appearance of good relations with a person who causes me nothing but pain, a person who behaves abusively toward me or others, a person who causes harm to myself or others. It does not advance a cause or better the situation of any group of people. All it does is prevent the rest of the community from feeling discomfort at being aware of conflict. But that conflict will exist no matter what: the only difference will be to my personal health. And no, I am not willing to sacrifice my personal health for others’ minor discomfort with being made aware of reality.

I am not obligated to articulate why I am avoiding this persoon or that one. I am not obligated to prove to you that my decision is justified. My reasons are my own, and they are valid. I do not need anyone else’s seal of approval to continue protecting my personal health.

Situations are complicated. And not all of the situation happens in the public eye. And sometimes, I am keeping it that way — keeping things private — for the health of the community. Sometimes, my avoidance of a person is attributable to my own personal background and triggers and issues, things that I have the right to keep to my own damn self. Sometimes, airing a personal conflict can create wider conflict with other people I care about over something that does not actually directly affect them. And I have the right to keep that to myself.

Sometimes, the conflict is a result of something that is relevant to the wider community. Something that is subject to political analysis or something that affects the concerns of the particular community. Sometimes, this conflict arises because I can see another person doing harmful things, behaving in harmful ways, and hurting other community members in the process. And I still have the right to keep that conflict to myself. I have the right to determine for my own damn self whether the actions I am capable of taking would have any positive result — or whether they might have adverse effect on my community, and how much and what kind — or whether they might have adverse effect on me, and how much and what kind — and decide for my own damn self where the balance falls and what to do as a result.

Sometimes, that means speaking up. It means rocking the boat. It means dealing with the unhappiness that results. And sometimes, it means staying silent. Keeping it to myself. And dealing privately with the pain that comes with this or that person’s continued presence and respect within the community.

Sometimes, I am avoiding someone because they whisk me back to painful times, through no fault of their own — simply due to mannerisms or patterns of behaviors which are not inherently negative, but which are just associated for me personally with negative things.

Sometimes, I am avoiding someone because they are downright abusers, even if it is not readily apparent to everyone else in the community. Abusers, you see, don’t always abuse everybody. It is quite common for abusers to be respected and revered within their wider community, considered valuable and indispensible, doing good things for other people — at the same time as they abuse one or more other people, behind closed doors, or in such a way as to slide under the radar of peers and neighbors. And their good deeds do not negate their bad ones. And I have the right to protect myself from further victimization at the hands of my own community as they come to the defense of this person they see as an upstanding and respected member being attacked without provocation (that they were aware of).

I have the right to tend to my own safety, and the safety of others who might be victims of similar abuse, or feeling similar peripheral effects of past abuse.

I have that right. No person can take that from me. Not for any reason.

This applies to people in my workplace. This applies to people in my blogging community (and yes, there are some). This applies to people in my apartment complex. This applies to people in my social circle. It applies any damn place I go. And I have just as much right to go there as the other person does.

If you respect me as a person, you must respect that right. You can keep on liking and interacting with any person you like. But realize that I have the right to abstain from interaction with those same persons. And you don’t get to question why. No matter how much you like them, it does not change the harm that comes when I force myself to pretend that nothing is wrong for the sake of other people’s illusions of harmony.

Asking for help is something I have never been good at. It’s rather like standing in front of a car hurdling toward you, intending to push it in the opposite direction. It requires an enormous amount of resistance. And I’m almost certain to come away with some sort of injury.

Lying in bed the other night, I had a realization. I seem to have two modes of being: at rest, sitting or leaning or lying in one place, unmoving, still; or in motion, pushing, moving, rushing, doing, working, over-working. And it is very, very difficult for me to move from one state to another. It is not as easy as just get up and go or sit down and stop. It would be expected, with my disabilities, that I would have trouble getting up from a state of rest to start doing, but wouldn’t you think it would be easy to just stop myself from doing and rest?

But it’s not. I find it very, very difficult to stop moving, working, doing when I am already doing it. Very difficult. In fact, I actually have to work at stopping working. It’s like once the do switch is on in my brain, turning it off is about as easy as pushing that hurdling car. I get to a point where I don’t even notice that I am doing; my consciousness turns off and I am pushing forward on autopilot, working from habit, memorized routines, just going and going — and my awareness has been switched off, perhaps as a way to avoid feeling the pain?, but that means I don’t know when it’s time to stop. I don’t know when I’ve reached the critical point, when I’ve done too much, when I cannot do any more — often, I don’t know until my body just stops doing and I am confused inside it, trying to make it move and being denied, and it takes time for my consciousness to boot back up, to kick on and make me realize oh — I need to stop.

It has come to a point where I’ve learned that I need to stop before it feels like I need to stop, because my body and brain simply do not have the ability to sound the alarm for me. Even when my body can’t keep going anymore, no matter how much I push it, it still doesn’t feel like I can’t keep going anymore.

So I’ve been teaching myself, over the years, to force an override at a certain point — not based on what I’m feeling at the moment, but based on predetermined amounts of time/work that I believe is what I can handle on the balance. It’s hard, because I’m so stuck in that inertia of doing that I often don’t even remember to keep track of the amount of time/work that has passed, so I might forget for some time after I’ve reached that point, and then try to abort belatedly.

Either way, even when I’m “being good” and recognizing when that predetermined point has come, the act of overriding my natural inertia — my natural tendency to keep moving — is not as easy as flipping a switch. I actually have to go through a process of convincing myself that yes, it is time to stop, and yes, I really should stop, no, I should not keep going, and yes, it is okay to stop, really, it’s okay, and yes, I need it — and so on (and on, and on, and on). And then even if I am convinced, I have to try to push in the opposite direction of my body pushing to go and do. And pushing your body to stop pushing is about as technically-impossible as it sounds.

Now, convincing myself just that I should stop doing is a difficult enough thing to do. But add in a sense of pride… and a sense of guilt… and suddenly convincing myself that I should do (or stop doing) something doesn’t seem like such a hard thing in comparison.

***

I am one of two clerks working on our program at my office. Last week, for three days, my partner clerk was not there — it was just me running the show. And I happen to think that I am knowledgeable and capable enough to do a pretty good job of it. The problem is that we are severely short-staffed — the two of us in our corner of the building are already balancing a workload that should require four or five clerks. So when one of the two is gone, well, things move from chaos to crisis, so to speak.

I have an amazing supervisor. I absolutely adore her. And she was keeping an eye out for me. She kept coming back and asking if there was anything she could help with.

And for that first day, I kept saying no. And I thought it was legitimate! One of the main assignments is something she is not supposed to do at all, and another couple are things that I just thought would be more complicated to have someone else do than to do myself. So I said no.

And then my husband poked a little bit of fun at me — he works at the same office — saying that my supervisor had been talking with him (casually) and mentioned that she kept trying to offer help, and I kept refusing. And they shared a laugh, and he said yeah, that sounds like her. She’s not very good about asking for help when she needs it.

And I needed it. I just couldn’t convince myself inside that I needed it, that it would help, that it would be OK to ask, and so forth. I was already so overwhelmed and using so much energy, and I watched that car hurtling toward me and knew I did not have the strength required to push it the other way. Not on top of everything else I was doing. I did not have the capacity to make myself ask.

Because I’m not supposed to ask for help. That means admitting I can’t do my job. It means admitting my disability does make me less capable than other people. It means admitting my disability does exist and does affect me. And I’m not supposed to ask for help, because other people can’t spend their time and energy doing something for my sake. It’s not fair to them. I don’t deserve that, to have anyone other than me devote a single second to me. Other people would deserve that, but I am not deserving. If I ask for help, I am telling that person “I am worthless. Useless. I can’t do anything right.”

Asking for help means sending the message to the people around me that I am actually not as good a worker (as good a person) as I keep insisting to them that I am. That actually, I am inept and incapable. That I can’t do anything right, that I do mess things up.

Asking for help is asking for special treatment. Asking for help is asking other people to pretend like I deserve the same consideration as everyone else, and deserve to be considered just as capable as everyone else, while also demanding that they treat me differently, do special things for me that no one else gets to have done. Everyone else has to stand on their own, and here I am demanding that all these people prop me up and say that it’s just the same as that person over there standing on their own.

Every single time I need help, I have to fight these thoughts. Even if I don’t actually think them consciously. Every single time I need help I have to take time and energy to refute all of these thoughts to myself. I have to take time and energy to prove all those thoughts wrong. And that takes quite a lot of energy.

So I don’t ask. Even when I need it. Even when I know I need it. And even when I know, intellectually, consciously, that it is OK to ask for help, and that I should ask for help. I still don’t ask.

Because by the time I’m needing help, I’m already at my limits. I certainly don’t have any energy left to deal with that hurtling car.

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.

It has been a rough several weeks for me. I was called back to my job on October 7. Around the same time, I developed an awful headache whose symptoms were entirely unlike my normal headaches (in kind; severity was … severe, but so are my normal ones) and only in the past two days has that faded — leaving in its wake a severe fatigue that actually came close to preventing me from writing six-digit numbers on applications at work yesterday.

Of course, when I am emotionally burned out, my body crashes. Serotonin screwup, adrenal fatigue, other stuff? I don’t know. And it has been a very emotionally turbulent two weeks. The temperature dropped without a warning, and the sudden winter weather has been an unfortunate sensual reminder of the awful personal events I went through last year, starting in October. It’s like I’ve been dropped into my own life one year ago, even as things have resolved or improved or smoothed out on that front… it ties only with my summer stuck in California as the worst events of my life, intense and injurious, dropping me into suicidal periods that (fortunately) ended up only scaring the hell out of me, rather than killing me.

And it has been a pressure of intense, high stress. I don’t know why I thought it would be safe for me to raise my voice in concern on very high-profile matters. Maybe the outrage finally got to be so strong it couldn’t stay quiet any more. But I did, and I can’t take it back now. It makes me wonder why I bother, ever, becoming involved in any space, rather than remaining in the background, quiet and invisible, slipping just out of notice. I can protect myself that way. It’s safe there.

Several people in my life, including at work, over the past several weeks who have been like watching flashbacks of my own life during its worst periods. Echoes. There’s the major and severe, mimicking the deeply abusive behaviors I could never escape from. And there’s the passing, the minor, the couldn’t-possibly-be-their-fault — speaking habits, common phrases, facial expressions — though, to be honest, even those wouldn’t be triggers if they didn’t come immediately after the behind-the-back scheming, theorizing about conspiracies, the twisting, the lying…

Why did I ever think I could do this? Why? What could I ever criticize? I am not just imperfect, you must understand. I am broken. Broken, broken. How can I ever expect to speak critically and not have that eye turn back on me? Why do I? When did I lose those self-protection skills? I used to know how. I used to remain highly disciplined.

But something gave me strength and security. And sometimes, that’s the worst thing a person can be given.

I don’t even know who my real self is. I never have. I’ve walled her off, time after time, building stronger and higher and deeper, covering my tracks, looking over my shoulder, making sure that nobody even knows she exists… if she doesn’t exist, she can’t be harmed.

I don’t even know whether she exists anymore.

I have been organizing old files and stumbled across this. Written during my second and final attempt at attending university, July 2005.

Purpose Statement: I want my audience to understand fibromyalgia.

Organizing Question: What is fibromyalgia?

Introduction: When I woke up in the morning on October 5 last year, I couldn’t even lift my head. My neck hurt so bad that I couldn’t stand to move it in any way. That day was the day of my midterm in this same class, but because of extreme pain and exhaustion, I hadn’t been able to bend over a book to do my reading since mid-September. I was in no condition to walk to class, much less bend over the exam—and I had been this way for three weeks. The reason I was having so much trouble? I have a condition called fibromyalgia.

Preview Main Points: Today I will be going over the symptoms of fibromyalgia, some misunderstandings about the condition, and finally the biochemistry as we best understand it today.

1. Fibromyalgia is a condition that causes widespread pain and fatigue.

   1. Chronic pain: It’s everywhere, and it never stops. There’s a constant, dull, all-over background pain. Overexertion pains—random pains. Stabbing pains, shooting pains, throbbing pains, aching pains, searing pains, burning pains—think of every pain you’ve experienced in your life, and cram all that pain into a month. That’s probably a light case of fibromyalgia.

      1. Dr. Devin J. Starlynal, a fibromyalgia/chronic pain specialist, published her book Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual in 1996. She says, “Chronic pain states are quite different from acute pain states. When you know the pain is eventually going to end and that you will recover and the pain will be gone, it is easier to tolerate the misery…. You do not ‘get used’ to the pain if you have a chronic pain condition. It becomes harder to endure.”

   2. Fatigue. When you think of fatigue, you think of being tired. The fatigue that comes with fibromyalgia is far more than just “tired”—it’s a state of near-absolute exhaustion, feeling like not one bit of energy is left in your body.

   3. Other symptoms and related conditions: Migraines, cognitive difficulties, Raynaud’s (extreme sensitivity to hot and cold), depression and anxiety

2. Fibromyalgia is often misunderstood.

   1. FM is often cited as a musculoskeletal condition, an inflammatory condition, or rheumatic. All three of these descriptions involve actual injury or dysfunction within the muscles, bones, and joints. Fibromyalgia directly affects none of these.

   2. FM is not the same as Chronic Fatigue Syndrome. The two syndromes are related, but continued research has begun to separate their causes, their functions, and their effects. FM has been called a condition of “physiological hyperarousal” while CFS is described as the exact opposite.

   3. “It’s all in your head!”

      1. Dr. Bernard R. Rubin, Professor of Medicine and Chief of Rheumatology at the University of North Texas Health Science Center, says in his 2000 book Handbook for Fibromyalgia and Chronic Muscle Pain, “Traditionally, Western physicians have divided medicine into two areas. In illnesses, there is either a physical problem—infection, injury—to the body, or a psychological problem. If no evidence of abnormality shows up on lab tests or x-rays, then the problem must be psychological. Therefore, according to traditional medicine, when a person comes to a doctor complaining of fatigue and widespread muscle pain, along with a number of other vague problems, and nothing can be found on the usual tests, the person is obviously suffering from a psychological disorder.”

FM is often dismissed as being psychosomatic—when physical symptoms show as a result of mental ones—hypochondria, imagination, or otherwise not real. This is simply not the case. Mental illness can exist alongside fibromyalgia, but that does not imply a causal relationship. Despite all of the misunderstandings of fibromyalgia outlined above, there is evidence established that fibromyalgia has real physical causes.

1. Fibromyalgia is a disorder of the central nervous system.

   1. Central pain amplification: In its brochure about fibromyalgia, the National Fibromyalgia Association says, “Most researchers agree that [fibromyalgia] is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The [fibromyalgia] patient experiences pain amplification due to abnormal sensory processing in the central nervous system.” (http://fmaware.org/fminfo/brochure.htm)

      1. Substance P: “pain feeling” chemical; higher levels cause a sufferer to feel more pain

      2. HPA Axis: Hypothalamic-Pituitary-Adrenal Axis, has to do with regulation of stress

         1. Adrenal Fatigue: “fight or flight” feeling, overproduction of adrenaline, then the body overcompensates by underproducing it, meaning very low levels of energy

      3. Serotonin has to do with depression but it also acts as a screening agent for pain—higher levels make a better pain filter , so lower levels mean more “bad” signals get through.

   2. Despite knowing this, we are still unsure of the cause of fibromyalgia. A great deal of theories exist. Not nearly enough evidence has been established to conclusively prove any of them.

Conclusion: I hope that in informing you about fibromyalgia’s symptoms, misinterpretations, and biochemistry, you have learned more about the condition today.

In closing… Fibromyalgia has often been called the “invisible disability.” It is invisible, as it causes no physical deformity, so you can’t tell that someone has it until they tell you. It is a disability, as the central amplification of pain can grow so bad as to prevent someone from being able to work—or attend school. To those who don’t know about the condition, a fibromyalgia sufferer just seem lazy or inactive or to complain too much—in fact, they may be pushing themselves beyond their limits; their limits are just lower than yours.

Thank you.