(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.”

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.

Things I’ve been meaning to say for some time.

1.

I am really bad about keeping up with my blog roll, followers, and reading. I am usually up to a week behind in Google Reader. I take a long time to finally get around to subscribing to the RSS feed on a blog I have been reading and loving for some time. And even then I take awhile to add it as a link. I also have the problem of figuring out how heavy a particular blog will be in content — in either length or frequency — and whether I will be able to handle adding it to my reading load.

Last year before I began my full-time job, I went through and culled every blog I could bear to part with (mostly the white liberal boy-blogger types, such as Washington Monthly) that aren’t bringing any news I don’t get from other sources, and aren’t giving me a perspective outside the mainstream dominant-group perspective (that is: Western, upper-middle class, white, cis, straight, abled, educated, etc.) This means I have a lot of trouble in that I keep coming across new blogs and writers I want to follow — but I honestly can’t get myself to stop reading the other people I still have!

There are people I come across, or people who link to me or follow me, and I take a long time to finally check out their sites, and if it appears to be a fairly heavy/frequent blog I usually put off adding it to my reading. :-\ But I am not ignoring anyone on purpose.

2.

I have a lot of trouble writing crisply and coherently on a consistent basis. Sometimes, the words flow without trouble. But most times, I am really struggling to translate thought to speech. A lot of this is what is often called “fibro fog” or brain fog. It’s a state of cognitive impairment common to fibromyalgia patients that makes it difficult to focus or concentrate, makes it hard to recall words, makes it hard to organize thoughts. It is so named because it feels like a thick, heavy fog settling in on your brain. It is hard to push through, hard to see where you are heading and how to get there.

I described it in my about page thusly:

I often have difficulty translating ideas into coherent sentences or pulling up a particular word important to conveying my meaning. My writing may be imprecise at times, like describing the buildings, greenery and landmarks surrounding my house without being able to describe the house itself. When I am angry it gets very bad — or maybe I get angry because it is so bad — and I can grow very frustrated at being unable to untangle the mess of ideas in my head and translate them to cohesive, understandable sentences.

Another aspect of it: I feel like my brain groups words together based on similarity in meaning — but files away all but one of those words. So I have trouble speaking precisely, using the right word for the meaning I am trying to convey, because I can only access the one word from that group, and no matter how hard I exert myself I just cannot pull up any of the other words. And the way my brain organizes these grouped “files” is haphazard, so I may not even be looking in the right group, so to speak — it may just be a group with a loose association to the group that contains the accurate word for whatever concept I am trying to express.

This gets very frustrating, to say the least.

There is another, much more personal reason I have for having trouble translating concepts-inside-the-mind into words-on-the-outside, having to do with my past and childhood, which I may elaborate on in the future. But that will have to be a long post, and I don’t have room for it here, at this time.

3.

I am a flake.

There is no way to get around it. It is who I am. I always have been, and always will be, a flake. No amount of effort, will power, meditation, medication, or otherwise will ever change it, because it is fundamentally what I am.

For a thousand different reasons, physical and mental and emotional, legitimate and il-, excusable and un-, understandable and not, I simply cannot hold true to every commitment. I am apt to forgetting things — anything — my cell phone when I go out, or to close the window in the kitchen when I turn on the air conditioner, or to read or respond to an email (no matter how important; ask both my husband and my best of friends, and they will inform you that they, too, have had it happen — often), to participate in an event or project I expressed interest in … even a very important doctor appointment for which I have been waiting for a long long time. Just last month I actually triple-booked myself at 2 p.m. on the 27th, for a doctor’s appointment, counseling and physical therapy.

I am a flake. It’s what I am. No matter how important something is, how much I care about it, how many check-points I set up to ensure I remember to do it. I am still prone to forget, delay, procrastinate, lose track of.

I’ve given up on changing it, because all it did was foster guilt and self-worth criticism and never actually changed the behavior itself. So what the fuck good was I doing — to myself or the other people who may be affected?

I am a flake. It is who I am. It will never change. And I’m not going to apologize for it any more.

That’s all for now.

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?

Seventeen pills of six different sorts, my 24-hour drug regimen.

I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

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.]