engagement.

I’m having a really hard time with it lately.

I’ve been on a medication for months now that is causing mood swings, suicidality (more serious than has ever happened to me before, even through far, far more traumatic events) and significant dissociation. My doctor won’t give me a prescription for the old medication (which we know works, but hoped this one might work better) until I see him and he isn’t available until well into September. I call every day for cancellations. I have yet to catch one.

I can’t connect to my own experience. There are these huge changes in my life and I can feel a radical shift in my political consciousness but I cannot even figure out for myself what it is, much less articulate it for the people existing outside my shell of skin. Can’t even describe it to my husband or best friend, much less to strangers and minor acquaintances.

I want to be out there. I want to be doing this work. I want to be out there thinking, speaking, shouting. Pushing, pulling, exchanging. My heart is in this so deep.

It has been continual frustration over the past year, year and a half, as I’ve lost connection with myself, lost spoons, lost wherewithal, watched as so much has passed me by and all I can do is putter along the side of the highway, slow and careful baby steps beside large and powerful vehicles zooming by in a flash.

I can only do so much and unfortunately, what I want to do requires so much of me. It’s not as easy as “think smaller,” do little things, they still matter, etc. Because even the little things require a base investment that I am just not able to afford most days.

So I think to myself, hey I have time tomorrow, this weekend, next month. And by that time, my mind has lost connection with whatever it is I was wanting to do, read, think about, write about. And to be able to go back to it, I have to give that base investment again. Take myself away from whatever is going on that moment, and immerse myself in this point from my detached unaware fleeting past, and try to re-connect to whatever was going on in my head at that time.

Perhaps not surprisingly, this never really works.

So I flit about from day to day, trying to keep my brain awake, taking in information, revving and whirring and trying to do something with it — but I never quite move far enough up the levels to the ability to engage. To stop struggling to just exist, to start doing something other than just be.

And the day passes, and I haven’t done anything, and I go to bed and wake up the next morning to start from the bottom again.

***

i’m going to be doing this in small, incomplete doses. it will be disjointed, incoherent, and inconsistent. the parts may not seem to have connection to the whole, or may seem to repeat themselves. this is the only way I can do things, so bear with me.

***

I’ve been doing a lot of reflecting in recent months.

I honestly don’t know what to do with myself.

My ability to be meaningfully involved with the various communities in which I have found place has slipped away. The condition I find myself in now leaves me mourning the loss of my ability to consider, to plan, to change or to modify, the things that I do.

I can only do what is immediately available to me. If something is not immediately available, I am not going to be able to do it – at all.
If I am writing, I can either write the words that spill out of my brain or write nothing.
If I am reading, I can either read the words I can comprehend right this moment or read nothing.
In all that I do, I can either engage with what I am emotionally capable of engaging with or not engage at all.
No matter what, I can either do something right now or not do it at all.

The me that is available right this moment is the only me that you’ll ever get. If I can’t reach every part of me, then those parts of me aren’t going to be available. Only the parts that are here right now effectively exist for you.

***

august 1, 2010

I’ve noticed certain patterns in my social life. In the way I interact with other people. In the way I conduct myself as a member of the community. In the approach I take to working with others.

I am not liking some of what I see.

I’ve spent the last six months or so trying to dig deep, clawing down and down, trying to reach the depths of my soul, so  that I can see them. So that I can figure out why things have happened the way they have — but more than that — what is within my capacity to change that will allow me to become the person I want to be?

***

august 6, 2010

I don’t know whether this is a function of what was modeled to me as I grew up (my mother has borderline) — or something innate in me just starting to come out — or whether I’m misinterpreting it altogether.

I do know I’m ok with it. It’s not wrong. It’s just difficult to deal with internally.

I lay low at first. Then I feel out my place. Then I grow comfortable, and I assert ownership of my place. Then something happens, something huge or something tiny I don’t even commit to memory, just something, and I grow scared. I look inward. I want to change something. Not in the sense of “something needs to change” but in the sense that I have identified the specific thing and know what to do about it. And this is where things fall apart: I cannot change anything, large nor small. I can only throw out the whole of me and start over. All over.

I’ve done it a few times. And I’m tired. Just tired. That building process takes energy. Energy I just don’t have anymore.

And when I think about it, I like my place. I’ve set things up pretty nice. There are aspects of me I wouldn’t change for a minute. I’ve grown into something that I like, and appreciate, and value. Immensely.

And I’ve made connections. Come to know people. Come to have people know me…

but that’s what’s so scary.

Because I can’t change. Not consciously. Because people have one concept of me in their minds… I’m not me, I’m not mine. I could change me, this person right here, but the me that exists in all those other minds out there… I would have to change each one, individually, one by one, and some of them wouldn’t change, and some of them people would fight changing, and I would have to assert my change, my right to my change, and put forth the energy, energy, energy…

Because I’m not me. I’m not a person. I only exist insofar as other people have concept of me in their minds. I don’t exist in reality. I exist in other people’s minds.

If I need to change — and I don’t have the energy to go from person to person, changing their minds — then I have two options: remain the same…

… or leave it all behind, and start over.

but I can’t. I don’t want to. I don’t want to dammit I finally started building a real person and now I am losing it, losing that, connection slipped away. Here I am again, removed of reality, a personless entity. Confronted with something difficult, the tangible person might just slip away, and I am a ghost again…

***

that started out being about the way I handle relationships with other people… and ended up being about the way I handle being.

***

august 7, 2010

Today I am going to MedExpress because I broke down this morning and almost killed myself. My medication is part of it. But my situation can’t be removed from it either. I can take care of the medication part now. The other part takes a long time to process.

***

written privately:

I have been withdrawing further and further, from everything, and every single time I stick my neck out even an inch and try to say something I end up regretting it. regretting ever speaking a single public word. regretting being a real-life person that doesn’t close herself in one room for the rest of her life, only observing, never participating.

I’ve been regretting a lot of things I’ve said and done in the past.
regretting a lot of my patterns of behavior, a lot of my own tendencies.

trying to figure out WHAT is bothering me. WHAT is wrong.

doubting the “social justice” structure, doubting the Set Of Rules that are set in stone and the choreographed steps of the One Way To Do Things that one must follow at all times or else be consumed in abuse.
that includes “callouts” it includes gotchas it includes the focus on Bad Words over all other forms of oppression.
have ALWAYS hated the word “ally” and have come to hate the entire idea of binary identity, you are X or Y, and the Rules that must be followed to count as either/or. always hated the way it incentivizes people to get involved in matters of justice insomuch as it boosts their cred to other people. rather than to help a fellow living being.

I’ve been wondering, fuck, how are we raised as children that we are extremely fluent in Good and Bad Words, in tv shows and music, but as a community can’t meaningfully engage on all the thousands of little pieces of people’s real lived lives? the way we treat each other, the way certain types of people are left to starve or left in solitude or left to die because it’s not our responsibility to _____.

I hate these discussions. cant fucking stand them anymore. don’t know what to do with myself when I get home, because I can’t imagine being happy with myself ethically with being involved in anything. anything.

I can tell you that the more I look back on everything I have done, the more I hate myself. over the past three and some years.

there are a few things I am proud of. and will always be. but they can probably be counted on one hand, the things that I would not change. out of all the thousands of words I have spoken, or nto spoken, for those three years.

I’ve been working INTENSELY on processing this. figuring out WHAT is wrong and then figuring out how to apply that.
i spend every single day thinking through all of this.

[a particular incident] was radicalizing for me, and not in the way most people mean when they use that word.
i think it broke my spirit.

I am thinking more and more that I give up on having a conscious part in this, or any community focused on justice, because I feel like being known as A Person starts to poison my ability to act toward the actual betterment of hurting people. it poisons things from the start. I don’t know if I, just me amanda, am capable of handling a public presence at all without doing some really awful things.

I just don’t want to say I’M DONE GOODBYE to everything and then find a way to be a help. to be wholesome. and go back on my word.

I just want to poke along in quiet, just be an average nobody who isn’t trying to be known just wants to do things to herself and let people take from that what they want but not go and engage them when they do. I want to exist as just words. not a person.

The only reason I can’t quit, if I’m 100% honest, is because I can’t EXIST without having this community and this reading to feed my soul. If I give up my involvement, I basically give up on living, because I haven’t found anything that feeds me in that way other than this, and I won’t survive trying to walk that gap. If I quit, I will die.

I don’t know that there’s such a thing as organizing that doesn’t turn to shit.
I don’t know that humanity can return something worthy when we try to invest in it.

***

august 8, 2010

I don’t even know what I think. I spent  this weekend thinking about blowing everything up. This blog, my identity, my involvement in anything at all. Today, I feel ok with continuing as who I am. Knowing that I can change, and that’s a good thing. Standing by what I’ve said in the past, because it’s more honest than trying to erase what I’ve done. I’d rather be real but complicated than be a squeaky-clean, artificial symbol of perfection.

I thought back on the things I’ve written, and there are some things that I think are good. and successful. and important.
and I don’t want to blow those things up.

I have no idea how I’ll feel tomorrow.

***

I think that for the health of a community it is essential that a wide variety of approaches are supported, encouraged, nurtured, valued.

No community can thrive, and make progress, for so long as it limits the range of human reaction in its members.

This means that anger must be accepted. Embraced.

It means that being measured and reasonable must be allowed from those who feel able to be as much.

It means that being measured and reasonable must never be glorified or set up on a pedastal as the one true way.

When people declare that they cannot tolerate sarcasm – or hostility – or any other negative-realm reaction — they declare that they will not recognize those who feel or display these things as fully human.

It is fully possible to feel one way yourself — to tend toward certain patterns of behavior yourself — or even to look into the advantages and disadvantages inherent in various approaches to engagement. It is ok to recognize that anger can skew things certain undesirable ways.

But you must also realize that “reason” has disadvantages. “Logic” skews things certain ways. Being “even-handed” or “level-headed” or “fair” can cause harm on the margins as well.

And we all must recognize that anger is an integral part of healing. When a community, or an individual within it, faces trauma, survives abuse, endures violence and coercion — part of human reaction is anger, even hatred of the other party, or those who enable the abuse.

Some people never feel it. Sometimes, it’s merely one of many phases a person must go through to make right. And for others, it’s one facet of the prism through which they view their day-to-day life, in perpetuity.

And all of  that is ok. Because all of that is human.

It is dangerous to deny these things to people. It is harmful to stunt their growth, their recovery, their building, by only allowing, or only approving of, the pleasant and easy parts of them.

Perhaps you want no part in an activism that engages in snark. Or that doesn’t frame itself for the benefit of those outside the community.

I believe it is far healthier for the future of the community and the rest of  the world to meet people where they are, and work with them, than to wrinkle your nose at their messy reality and wash your hands of them.

***

All organizing is doomed to replicate the very structures it purports to destroy.

There is no such things as a human being free of influence. All human beings are shaped and moulded creatures, moving through their world differently than any other human being around them. All of the things that happen to us, all of the things that are impressed upon us, are irreversible. We can take those things and move in a somewhat different direction, but we can never be free of them altogether.

Given this, there is no possible way for an individual human being to create something that is not foundationally built upon the very things that person is trying to counter.

This is true in so many ways. For example,

By fighting gender oppression in the US, we are accepting as a basis the gender structure that the US maintains, and forming ourselves, our lives and our work around it.

By fighting gender oppression in the US, we are accepting as a basis the social structure that belongs to it, and imposing it on those who live outside of it, living entirely different types of lives under entirely different influences.

But even if we were to (claim that we) forsake that structure and instead build something entirely, completely new — we still begin that structure in the ways we have been taught to build. We still operate together in the ways that we have been taught to operate. We are still using the same language we began with, still interacting by the same patterns we began with.

There is no way to escape a system. Ever.

This means that movements are guaranteed to devolve in certain ways. Guaranteed to commit injustices against the people already beat-upon. Guaranteed to hurt each other, to experience divisions, as time wears on.

***

This does not mean that therefore, organizing is useless. That therefore, movements are worthless.

What it means is that we will perpetrate the worst of sins against our fellow human beings and we must accept that it will happen. We must let go of the idea that we can ever, ever, be free of the virus that infects us. The tighter we cling to it, the more the injustices spiral out of control.

***

I actually think that part of the beauty in life is found in the ways that we build imperfect things upon even more imperfect bases. The way we take things that have myriad problems, and push and shape and coax them into being something new, something entirely different, something existing on its own right — something still imperfect, but deep.

Deep.

Deep, containing multitudes, changed and changed and changing, storied and historied, inconveniences and complications…

We will never create something out of nothing. We will never begin a movement that is brand new, that is pure and free of mistakes at the start.

Perhaps we are better off for it.

***

can I have that kind of history? can I be that kind of complicated? and still be valuable?

***

august 9, 2010

I’ve found over the last few months, my own internal reaction to the same sorts of stimuli is broadly (but slowly) changing.

I’m finding myself more reflective. More peaceful. More generous in consideration.

I’m mulling over things and reaching different sorts of conclusions.

I like these things, because they are pleasant to experience.

But I refuse to think of them as being better. More moral. More right. I refuse to comply with anyone who would expect those things of me, or of anyone else. I refuse to have these things set as ideal, to create them as a standard.

Because this is just another route to edification. To building and sharing and bettering.

The different conclusions I reach mean that I get to internally enjoy a wider range of thought now — not that these conclusions supercede the older. Not that they are “right” and the older “wrong.”

The benefits that I give to others (of the doubt – of kinder, gentler interactions – etc.) are benefit that they do not deserve, and I am not obligated to give. They are benefits, not rights. They are not the right thing to do to one another. They can elicit certain desirable reactions in those others, such as being more likely to listen, more willing to consider my point of view. But I also know that human beings have a hard time changing until they get a spanking. That sometimes, it takes a rough fight for something to click — or for them to understand the importance and necessity of the concepts being communicated to them.

To really grasp the depth.

The right thing to do to another person is to engage with them without oppressing or abusing them.

That is a very wide set of boundaries to set, allowing for a very wide range of interactive approaches.

Including screaming “fuck you” at someone who has hurt you.

Even when they have no contextual understanding of why – or even that — you are hurt.

They don’t have a right to understanding. You have a right to be free from abuse and oppression.

Roughness, on the other hand, is a necessity.

A child might never understand why sie is supposed to avoid the stove if sie is never allowed to experience the pain of the burn.

A person might never understand what’s so bad about what they’re doing if they are never exposed to the pain that they wreak.

Pain is necessary to human experience. Pain is a signal that something is wrong.

***

I’ve made the mistake of trying to protect my husband from ever having to feel bad about anything he had done to hurt me.

I’ve made the mistake of trying to protect my husband from ever being exposed to the pain that I was experiencing.

Because…

Isn’t it just as bad –

Isn’t it equally wrong for me to make him feel pain?

Isn’t it equally bad for me to expose him to that pain?

If he knew that he did something wrong, why did I have to add, for him, guilt and regret on top of knowledge?

If I was hurting inside, then there was already enough pain for the two of us — there’s no need for me to add more pain — right?

Wouldn’t it be cruel of me to reduce my pain by asking him to feel some? Wouldn’t it be highly selfish?

Two wrongs don’t make a right — right?

I’ve made that mistake before. In the end, we almost lost our relationship, and both he and I endured personal (related but separate) traumas — because we were denying each other the privilege of sharing in one another’s burden. (You know, that whole thing monogamous relationships are supposed to be about.) We were trying to shoulder burdens individually, avoiding honest communication that would, yes, cause immediate-term pain, but which would be better for the health of our relationship in the short and long terms.

And I discovered something –

– sometimes, I have to let him feel that pain that exists because of his own actions. I have to let him feel the true weight of it. I have to let him experience the injury of it.

Because if he never feels that pain, he never makes that intuitive connection about why his actions were harmful.

He has to burn his hand to understand that the stove is dangerously hot. He has to feel the searing pain — and he has to work on healing his own wound.

I have to be there with him, through all of it. Be there to hold him up and help him process and recover.

If those things don’t happen — then he cannot be there with me through my troubles. For him to “be there with me,” I have to open up and let him go through the things that I need to “be there with him” for.

One cannot occur without the other.

If even just one of the two doors is closed, nothing can get through.

***

i realized smth abt myself

i shouldn’t let ppl “let me down” bc i shouldnt be expecting them to be perfect allies, a concept i hate applied to me, so why do i apply it to them

they are ppl they will make mistakes they can do hurtful things

but i shuoldnt turn it into a personal slight or a way theyve personally failed me

bc that makes it about a rel’ship btwn 2 ppl and not abt the structural issues and cultural attitudes that need addressed

those attitudes n those structures can be changed

we can work on that w them

not end that conv prematurely to focus on how they failed me…

***

august 11, 2010

I am too tired to write today.

I find myself wishing that I could just step into an alternate life space. Like stepping into clothing. But I would step into being me – the me I want to be. Already have the history, the approach nailed, the habits set, the emotional and communicative vocabulary mastered. Just step into the outfit, zip up the side, and be there.

I can imagine a me who is comfortable, happy, and at peace. Who has interactions she is proud of her behavior in.

It doesn’t mean she’s necessarily going to be the popular kid at school, that everybody is necessarily going to like her. Or that she’ll never have conflict, never be at odds with someone, never have a frustrating exchange that goes nowhere and wears her down.

It just means that she will be calmer. And gravitate toward different modes of conversation. And maintain a different focus.

Then again… can the first ever be true, when the second is allowed for? If people don’t like me, if I have conflicts, if I make mistakes, will I still be happy with myself, and at peace? Will I still stand by my own actions?

***

I realized something else today.

So much of what goes wrong in many of these conversations happens because of inelegant phrasing, misunderstood points, poorly-connected concepts, poorly disclaimed assertions.

So much of what I kick myself over, I do because of these things.

But, I think: I just have a physical disability that sometimes has cognitive symptoms. Sometimes my wording is clunky and I have trouble really communicating my point; I have to beat around the bush and hope that people will look toward the center of my circular path to try to deduce what I am actually trying to say.

I fault myself for those things.

But fuck. Why? Why do I fault myself for that? Why do I accept the standards practiced by wider society, wherein speech must be precise, artfully navigating complicated subjects, or else the speaker cannot be taken seriously and any misunderstandings are hir own fault? Those standards serve to effectively shut out certain people from public conversation. People who lack access to high-quality, long-term education. People who live with learning disabilities or cognitive disorders. People who learned English as a second language. People who speak nondominant dialects of English.

These people will suffer a greater burden under that sort of standard, fighting against constant resistance, dealing with far more misunderstandings and having their arguments endlessly derailed.

All because of an insistence on maintaining this standard built on expectations of a certain ability, a certain background, a certain experience.

and no, I will not apologize for  thinking that is fucked up.

what I will do? is try to put into practice a flexibility, and budget a little more energy toward, as a standard, making sure I am understanding what a person is trying to get across, and allowing room in any response for my reaction to take different direction as my understanding of the conversation adjusts to the person’s expressed meaning.

That does not mean that people can rationalize their way out of saying offensive things.

but… maybe it means I will let go of coming down hard on them, especially from the start. let go of the need to make a Big Deal out of what they just did wrong.

because maybe, I’m not even understanding what they did.

this is something I *hoped* others would apply to me, all along, with my difficulties with spoken/written communication. a benefit I hoped some would offer me.

I don’t think I’ve ever really connected, on that deep-down level, on why, and how, to offer it to others.

and I really need to do that.

I really hope I can do that.

***

I can offer you explanations why I have done certain things.

Why I have rushed to judge people.

Why I have judged people. at all.

Why I have — while knowing I hated the very idea — given in to labeling certain people or groups as Bad People because of certain things they had done wrong.

and discounting everything they say or do from there on out, because of those wrongdoings.

(i will not take argument about the fact that they were, in fact, wrongdoings.)

Why I have invested in “call-out” culture.

Why I have practiced — and propogated — The Rules(TM). the set of laws governing the precise process a person must follow in a given situation. the precise steps they must take. the precise words they must say. the precise reactions they must offer. [sometimes, The Rules(TM) call for a person to offer the "wrong" reaction, instead of the "right" one, so that The People may have a target for blame, feigned righteousness, and ridicule. if the "wrong" reaction is not offered, The People have the right, under The Rules(TM), to make one up wholesale.]

(by the way, what is the definition of “objectification” again? making a living, breathing person into a vessel for someone else’s purposes? … hm.)

gdamn, I am horrified at how I have participated in that culture. and how I have participated in forcing it on others — in completely overtaking a conversation about a concept — sometimes about people’s lives — and turning it into a conversation about how The Rules(TM) have been followed and how they have now.

that shit is poison.

***

I want to believe in redemption. I want to believe in power. the power to improve. the power to stretch, to learn, to grow.

I want to believe in capacity. I want to believe in potential.

I want to be there alongside someone who is pushing and pulling, struggling with new knowledge that they may not have even accepted yet — but often they do accept it, and process and digest it, and over time incorporate it into their daily life…

I hate the way I’ve discounted the very possibility of any of that, sometimes.

I hate the fact that I know I’ve made people feel that way — that their potential is being discounted, that having done one thing wrong means being written off the rolls of the good for eternity.

***

august 12, 2010

written in early june, unfinished (i say that like there’s any other status for anything i write):

Maybe I’m not supposed to say it, but I’ll say it: I regret pretty much everything about my involvement in that Feministing boycott.

Look, it was bullshit. Bullshit what they did, including dropping the “tone” argument (in those words) on me for being mildly assertive. Bullshit that they think a history of five posts that almost all played into exactly the disability tropes we want to deconstruct constitute a history of meaningful engagement with disability. Bullshit that they are OK with having a comment space they don’t want to put the effort into maintaining — leaving it to the wolves.

But here’s what I regret, truly, deeply, to the bottom of my soul:

Getting into the blame-the-individual game.

It honestly eats at me. I hate it. I just hate that I went there. I hate that I did that. I hate it for a variety of reasons.

It sets me, or the criticizer, up as somehow more righteous than they, the people/group being critiqued.

That sets me, the criticizer, up for failure when it is revealed that I am no perfect child myself, and have my own issues and have made my own shitty mistakes.

It makes it difficult to engage with them, the criticized, if they do make a genuine effort at improving, even if they stumble as they navigate new territory (even if it’s territory that shouldn’t be new).

It divides the audience, you, into camps. People on Side A and Side B and over there, people who don’t give a shit about this drama and just wish we’d all shut the fuck up already. (Those people don’t matter.)

It makes the whole conflict into a controversy to be consumed.

And that’s the issue here. That’s what I’ve learned in the intervening time. Either it’s a controversy that can be parsed for the consumption of the hungry masses, those eager to find a way to make a name for themselves — by playing the reasonable one, or by staking out a righteous position — and those who are just using your issue to settle old grudges … or it’s nothing.

Either it can be consumed as a product, a way to prove something about yourself, the bystander, the individual — or it’s not worth any attention at all.

Pay no mind that the struggles of marginalized people every day go on in ways that are not easy to gin up into “controversy” — ways that are messy, difficult, not easy to navigate — but because they are not of use to the observing masses, for the personal betterment of the people unaffected, they aren’t even worth more than glancing observance. Onto the next Gawker slideshow.

***

I think part of the reason I tended so much toward a flip of a finger and a “fuck you” was because I didn’t know how to assert my own boundaries.

I didn’t know how to say “This is more than I can handle,” or “You have crossed a line,” and add, “but I cannot articulate what or why right now, and I should not have to” … while still being ok with what parts of the conversation were OK, and perhaps (but not required to be) OK with addressing those without addressing the bad parts.

Part of why I would start flipping out and go into pile-on mode is because someone crossed a line, and I had these intense feelings of violation inside me, but to acknowledge all the other parts of the conversation that didn’t cross a line felt like it would be denying, to myself, the feelings that I had. That were very real.

And what I have desperately needed, all my life, is realness.

To deny those feelings would be to deny my very self, my very being, my very existence in reality (as opposed to dissociated ether).

It would be a violent act against my own body, and I could not do it.

But I couldn’t identify that boundary. I just… knew it was there, and had this hot, intense, wordless instinct/impulse/inner knowledge that I could not violate it, that to violate it would be as to death. Just that incredible, deep, burning feeling of being trapped, knowing something is threatening your life. What do you do to that? Except lash out, beat out, violently thrash about in a thoughtless attempt to survive, without even having the time to know what it is that is threatening you?

I feel now, like… I see something that crosses one of those lines, and my heart wells up in my throat and I feel the burning behind my eyes, but my self-awareness is on, and I can stop to consider what it is that is bothering me, and what it is that seems wrong, and evaluate the idea and its validity, and possibly engage it on non-flipping-out terms.

I’ve also started asserting, to myself more than anyone?, my right to not engage on things that I know threaten my being that way.

Like when I’m this close to committing suicide, I had offered thoughts on a touchy subject, and someone responds to it in a way I can already tell is not going to be pleasant for me.

I can respect that person, and know that she was probably, actually, making some good points (while I might have disagreed with her on a fundamental basis, or had a different perspective) and important pushback. But still acknowledge that this discussion threatens my being and just stay away. Click away or scroll away from any mention of it, stick with things I know I can handle.

I never used to be able to do  that. To stop. And assert that boundary.

If I felt connected to something — a person was saying something directly to me, or it was something relating to me the person, or something which is of deep and far-reaching importance to me — I felt… not obligated… but drawn, strongly to engage with it. Even if it was something that was going to upset me during a dangerous time. Even if it was something that had a good possibility of crossing certain lines. Even if it was a person I knew was acting in bad faith, or just plain known for being intentionally difficult and cruel. My attention was just… a given, something that wasn’t even under consideration, of course I had to pay fucking attention, and possibly put in my two cents. Usually in one of those nefarious tones.

I could not look away. Boundaries were extremely difficult for me to manage. Extremely difficult to make myself create them, and maintain them. Tending to them, caring for them — out of the question, because I was terrified of them.

I’m learning, slowly.

And I think it will be better for me, in managing my relationship with my peers and community members.

***

august 13, 2010

focus on language can be a learning phase for ppl new to the movement/concept of disability rights

we shouldn’t focus on it to the exclusion of all else, but it is a subject that newly-political folk can cut their teeth on, a way for them to get used to disability centered analysis, and talk of it should not be suppressed

tabs otoh need to leave language alone, because no matter what when they speak up to enforce good words/bad words, they are participating in a diluted/lite version of dis. activism that refuses to go any further than the safe and easy parts for them to modify, in a way that helps them make a name for themselves as “true allies”, again taking the entire focus off the conversation about any number of things affecting disabled ppl, and again making tabs dominate conv. (now instead of being about whatever topic, including disabled ppl talking abt their lives, it’s a tab person talking over everyone about whether or not some person said a bad word)

language is important, but language should not supercede all other concerns.

tabs need to let the disabled ppl talk about language, let them be the ones to decide when a word or phrase is harmful, let them be the ones to point it out in the situations they decide are appropriate. if they want to support pwd in this matter, they should not talk about it themselves, but should lift up and promote the works of pwd who talk about it. rather than talking themselves, they should reference and direct other people to the works of pwd.

***

I’ve been struggling to make sense of everything that is going on in my head, that has been going on for months.

There are so many changes I want to make. Part of why I try not to run around declaring my intent to make them is because I have to identify them first; I have to figure out what’s wrong before I can figure out how to make it right. Sometimes it takes me months of shaking things around inside my head to get some of those ideas to fall out my mouth in words rather than lurching gibberish.

But part of it is, as I wrote a little while ago:

Right now I am trying to refocus. To take a look over my activism and engagement. And seeing shit I’m embarrassed about. And hate myself for. And want to change.

But as my husband and I have done in the past: don’t make promises that you will change. Because what matters is that you do. And you can’t guarantee that you will. So I would rather you just hold your arm around me and stumble forward with me. And work on your shit. We will only ever know if the other is going to change once that change is put into effect. That takes years. Years.

Years.

***

I wonder sometimes whether we do injustice to the whole picture of people’s lives by trying to make judgments narrow slivers of their experience.

It manifests itself in the way we try to slice out human experience like we do sections of beef. The way people are easily __categorized__ into binary states of being, into neatly-delineated pre-set __identities__, the way those identities can never combine into something different than the simple sum of their parts, but must be as easy to understand as the addition of single-digit whole numerals.

But another way it manifests is in the way that we judge people’s actions.

The way it’s “just as bad” when the woman beats back on the man. (to the point that hetero women often get arrested for DV because their abuser knows its another avenue to abuse them. case in point, my sister with her ex-marine husband with a buddy in the system.)

because when you look at one narrow slice of that person’s life: yeah, the pure act is “just as bad” no matter who does it.

The way DV victims will often not let on that they are being abused to the people around them — family, friends, teachers, coworkers — because they know of the swift and unequivocal condemnations of the insidious beast that is that person’s partner.

because in a situation of your hypothetical het man and your hypothetical het woman, in your stereotypical het relationship, it is understood that abuse happens because a person is evil and malevolent and mean and there can be no room for any other facts.

but what happens when you step back? and look at the whole?

that woman is looking, not at a narrow slice of a hypothetical situation with imaginary people. she is looking at her life, her real life, in all its complexities. she’s looking at the things that her partner does that endears him to her, or the history they have together, or the fact that he is working his ass off to keep her and the family fed, or the way he stays at a job that is killing him because they need the health insurance it offers, or the sweet things he does for the kids.

Or maybe none of that is true, maybe there really isn’t much positive in the relationship, but it’s fucking HERS.

And to have someone loudly, unhesitantly condemn that? and if she squeaks a single word in protest of that condemnation — or simply lets on to the complexity of the situation as a whole, the conflicted feelings she has about it? what do people do?

they call her brainwashed, battered wife syndrome, inexplicable. No one would have “abuse” happen and rationally choose to stay.

and maybe all this does is just solidify her devotion to him. or to silence. because it’s just been demonstrated to her, that no one else is on her side, either.

just the side of that imaginary hypothetical stereotypical person.

no place is really safe for her. the real, true being, her. everything encompassing all that she is, and does, and feels, and lives. no one accepts that. only the pieces of her that they like, that are convenient to them — that they can use for their purposes (proving to themselves a point about their own lives, or a stereotype about abuse victims as a group).

She is a slice of a person, a sliver of an experience that we the community can extract from her, to inspect and analyze, to hold up to make a point off of. She is just a piece, a section, a portion. Not a life, a living being, a breathing throbbing soul, a person with her own experience that is made of her own history and her own personality, that is completely and totally different from anyone elses.

But we have grown comfortable with this practice, taking that huge and complicated beautiful mess of a life and narrowing our focus in to one tiny spot in its landscape, and have entire conversations about this one little tree without ever one acknowledging the huge and intricate ecosystem in which and on which it survives. Whether that system is thriving or deprived and dying makes a big difference in what conclusions to draw about that tree, but we never want to acknowledge the rest of the expanses of that whole landscape, that whole picture, that whole being. That would complicate things.

To an extent, simplification is a tool that can be put to useful ends, but it is one of many, many tools in the chest, and we should caution ourselves about its drawbacks, about the costs that come with using it. Right now, we seem to be using it while pretending that there are no costs. And vast swathes of living breathing landscapes are scrubbed out of existence and we wonder why the tree starts dying.

***

There’s something else that I think is highly important to any healthy community, or movement, that slips through the cracks when we engage in this narrowing of focus, this eliding of — not just context, that’s not really the concept I’m going for here — but wholeness…

That is, in any conversation on any issue there is going to be a lot of pushing, and pulling, and tension, and conflict, and difficulty. It is going to result in strained patience, hot faces, teary eyes, and sore feelings. And these things need not always be. There is no reason to create them where they would not otherwise occur. The things, themselves, are not necessarily valuable in and of themselves. But they can be symptoms of healthy change.

What we need when we talk about issues affecting real lives is for the conversation to be bursting with a wealth of different focuses, different approaches, different goals, different methods.

We need people to be “reasonable” and to try to reconcile our ideals with the reality of the world. We need people to figure out how to implement these ideas we have, and how things might go wrong in doing so, and what issues might come up in doing so, and how we might address those things if they do.

We need people pushing back strongly against those who would strike out middle ground and forge compromise, reminding them of what they might forget in their focus on the achieving the possible. We need people who will cry out against injustices, no matter how it might offend those outside, and people who will take middle-grounders to task for the things their movement-programs fail to address.

We need people who will do diplomacy to people outside, who will try to introduce them to easy topics, try to wean them onto a diet of political awareness, try to frame things in a way that they will understand, try to find ways to convince them how this issue is relevant to them. We need people who will be kind and gentle, who are there with reassuring words to fall back on when they make a mistake, and positive reinforcement when they do something right.

We need people who are harsh and grounded and ready to make clear those same outsiders exactly the greusome realities they have a role in creating. We need people who are hardened and unsympathetic, who are credibly able to make an uncooperative outsider’s day quite unpleasant if they choose to engage in bigotries.

We need people who will explore the boundaries of the conversation, searching for new frontiers, pushing into places that are uncomfortable, unsettling.

We need people who know how to get shit done to keep everyone fed and clothed and sheltered and stimulated. We need people who know how to work the system, and we need people who know how to work around the system.

All of these things get lost when the conversation, instead, becomes focus on one tool in our toolbox. One very narrow method or process, one particular style or approach, one device, one instrument, one tool in the enormous toolchest of relationships or organizing or community building. When one style of speech is condemned, or one point of view is diminished, or one way of accomplishing something is held up as exemplary.

Because when you are looking at a cropped picture of something, it might look bad. It might look insufficient to reach its stated end goal, or it might look unpleasant in the absence of context.

But when you widen your view to include the entire scene, that act might change in connotation. It might not be perfect, and might not accomplish everything. But it serves a purpose that perhaps wasn’t being addressed. It fills a need that might have gone unfilled. It shapes a space in a slightly different way. And perhaps we couldn’t move forward, in the original space. Perhaps we were smacking up against the boundaries we had created before, and finding our needs growing all the while.

Maybe it takes a lot of different approaches to help shape our space the way it needs to be.

Maybe we never fully understand what we need, and constantly have to make adjustments, and find ways to accomplish a reshaping, to account for newly gained knowledge.

maybe we all serve different roles. and maybe we all need to realize that the role we fill cannot fill the needs of our entire community. that our role is very important, but at the same time, so are the other sorts of roles people fill that are different than ours. and that personally, we might not fully understand where they are coming from or how they go about things, but we must realize the unfortunate limits of our own individual imaginations and allow for the possibilities of the collective imagination.

of course, what we collectively imagine is subject to a lot of push and pull, teem and throb…

***

we need people who can write reasoned, objective analysis.

we need people who can write impassioned pleas, and compelling attempts to persuade.

we need people who can bring deeply-felt emotion, who can get across the importance of a situation, or the true effects something has on a living breathing life.

and we need people who can write from experience, who can tell personal stories, who can convey humanity.

***

august 15, 2010

scribbled on a notepad on my bedside table, in the dark

putting

things in stark terms

overusing as a device

people get distracted

i can be more

– generous? –

neutral in

explanation

to give greater number of people access to my analysis

then again, over-

reliance on “reason”

logic neutral objective etc.

shuts out many

marginalized people too

discussion approach

centering around preferences of dominant group not

needs of marginalized group

speaks to necessity of

many approaches

& space for multiple

& variant conversations

not all needs can

be served with one

approach

choosing just one

as the only “good” or

allowable approach

means explicitly

rejecting certain

people’s place in

any conversation.

***

I do feel highly uncomfortable with my own overreliance on stark, unforgiving terms.

I want people to give me room to breathe, room to work, in any interaction. Because I want to be able to learn something from it. That doesn’t mean that any wrongs are ignored, or immediately forgiven. It means that sometimes, the shape of the conversation changes, when the focus narrows on a specific part of  the interaction, when there is a whole wealth of material and opportunity to explore in the greater conversation.

I want to explore. I want to discover. I want to pursue a politics rooted in wholeness.

***

I want to be someone who recognizes and acknowledges the whole of a person.

We cannot live for so long as we are chopped up into conveniently-sized portions for the consumption of others.

***

I’m wondering about the way I interact withmy communities.

I’m thinking about the structure of internet activism and the incentives it creates for bad behavior, abuse, manipulation.

I’m thinking about the way that every group is, in some way, an enormous failure. The way disability organizing is overwhelmingly white, for instance.

No matter how radical any group is, they are limited. Humanity is limited. It can only understand things through lenses, and no lens can take in the whole of a scene at one time.

We are all limited by the lenses we use.

If we are looking through an anti-racist lens in the US (and I mainly mean the lens that white folk use),

we are probably eliding the structure of racial inequities in the world as a whole. We are applying the structure of the US racial system to our thoughts and actions elsewhere in the world — even when we are trying our hardest not to.

If we are looking through a disability-positive lens,

we are probably assuming certain things about society where we live that may not be true in societies across the world. How would disability activism change in an area where there are no modern streets to worry about curb cuts? How would we re-focus and  re-center the people affected? Would we be able to?

Every lens skews the view of the person looking through it. And we cannot see without those lenses.

I’m thinking about how even some of our most venerated leaders held considerable prejudice, and advocated for the “wrong” side of certain issues.

About how Obama seems to be personally uncomfortable with queerness, and is deporting great masses more people under his administration than

About how Gandhi wrote against dark-skinned people in South Africa in his early years there.

About how important it becomes to us to deny that there is any possibility Martin Luther King, Jr. might have personally disapproved of gay marriage, regardless of what he may have thought himself (point being, if he were shown to inarguably believe in the rights of gay folk too, we would clutch tightly to that — and that is indicative of something).

About how we fashion our leaders into idols. About how we strip them of their humanity, scrub them clean of any blemishes, cover them in white virgin cloth, and freeze them in stone, so that we can display them to the public as a point of righteous pride.

I am also thinking about the way these shining idols shape the way we view each other.

I’m thinking about how I would see a person, and expect them to be close to perfect. And when they failed on one thing, grow immensely disappointed with them and feel as if I have been betrayed. As if they were lying to me about their perfection. That they probably never claimed, but that I wrote in for them.

What good does this do me? To expect nothing but the best, find out that these human beings are human, and feel that I must disassociate myself with them to protect my own image (of myself)?

It doesn’t leave me with a lot of people to associate with, I’ll tell you.

***

Does it count as depression when you know you’re too emotionally tired to go any further, and you just want to go to bed now to avoid the mood down-swing you can feel coming, but when you look at the clock it’s only 4pm?

***

for a long time, I have been creeped out by a certain type of person in the blogosphere.

for a while now, I’ve been hating and fearing the times I know I’ve played that type.

it’s the person who is there for every fight. there for every drama.

the person who’s got the gossip on all the parties and can report on the game.

the person who has to take every drama and analyze it to death. has to give the play-by-play and offer commentary on every little move. where so-and-so went wrong here, said a Bad Word there, broke The Rules(TM) over there. where so-and-so followed The Rules(TM) well here and you all should observe so-and-so’s example.

the person who can always fit an incident into a convenient narrative mold, shove it in as tight as you can and pop! out comes the pre-shaped narrative. the person who can always find a way to create two clearly defined and opposite sides, and set up the argument in such a way that the Right Side and the Wrong Side are easy to deduce if you know The Rules(TM).

the person who hangs around like a vulture, waiting for someone to slip up, trip up, fuck up — so they can pounce, and pop them in the mold, and serve up the resulting conveniently-shaped thing for the public to devour.

consume.

the person who knows the right words to repeat, and the right people to suck up to.

the person who knows how to network. how to build a following.

the person whose interactions in the community always seem to come down to winning. being the best activist. the most perfectest. the best “ally.”

and it just feels weird because they sau all the right words along the way, but ultimately it feels like … they aren’t in it because they care about the issues they’re talking about. they’re talking about those issues so that they can be in it.

and seem to get so excited when something new erupts. because it’s not a clear sign that there is some pretty tough pain going on. it’s a clear sign that there’s a new drama to reputationally profit off of.

***

you know when this finally came to head for me?

that big fucking feministing blow-up. (which one, you ask, and i say exactly)

i regret ever getting involved.

i regret it deep down to my bones.

ever since it happened i’ve been withdrawing further and further, because i saw some ugly shit in that, and what did it result in? what good became of it?

i came to distrust a lot of people after that because they kind of… disappeared… after the drama was gone.

there were people who were glad to talk the drama, but weren’t there for the quiet moments when we were talking about something that couldn’t be played against someone else…

that was unsettling.

and i started examining exactly what was unsettling me

and over time i’ve come to realize – it’s my involvement in the first place.

the fact that i stood up and “called out” someone

the fact that i got into the realm of blaming individuals, shaming individuals for being *ist, and therefore Bad People who shouldn’t be listened to by the wider community because their reputation was tainted

that game is poison.

“calling out” and categorizing people by their perfection-in-my-area quotient and demanding that they repeat after me the Right Words they were supposed to say, that they follow The Rules(TM) to the letter or have their misstep (or conscious refusal to play the game) used against them, used as examples of their bad faith.

it’s poison.

it kills communities.

it eats them from the inside out.

***

august 16, 2010

I don’t know if this place has anything for me anymore.

If I have anything for it.

I don’t know if I have anything left to say.

and I’m tired of fighting.

and I think I need to just let go.

let go of my idea of community, of relationships.

just stand on my box on the street corner, and speak.

and once the words have left my mouth, let them go.

let the world do with them what they want.

Some of the biggest changes in my life all seemed to happen in a cluster. And I’m grateful for each of them.

But I am a different person than I was three years ago. Some ways for the better, some ways for the worse. My life has changed radically in that time — more than once. And I have settled down into being the person I have become, though I am struggling with reconciling my desires and expectations of myself with the knowledge that my core being is just not going to change.

Yesterday was the closing of a chapter for me. An opportunity for closure and a chance to finally, truly, pack my bags and move on. I’ve already done this in the literal sense; I must be capable of handling it on a metaphorical basis, too. Right? I am hopeful, though I reserve judgment until I see myself put these concepts into practice over time. I have processing to do, but I feel… comfortable, peaceful. I have not reached a final peace. But I am doing what I expect of myself at this point in my journey toward it. With that, I am comfortable. With that, I feel at peace.

There are more changes for me yet. I know I will handle them when they come. For now, I can be ok knowing that whatever I am today, I will likely not be tomorrow. And I can still appreciate my position today, and strive toward what I want for myself today, even knowing that when I check in with myself years from now, everything will be different.

To tell the truth, that thought is extremely comforting.

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.

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

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

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

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

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

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

I have not been able to form words, even to myself. I can feel the presence of something inside me, feel the need to pour out in words, feel the emotional composition of the space — but when I reach, I find nothing.

I wanted to explore contentment. I wanted to reflect on security, on legitimacy, on ownership. I wanted to look at what I’ve gained — what I’ve established.

But when I reach, I find nothing.

I can see the form of the space emerge. But I cannot access the contents.

I need to be in there, digging, shaping, sorting, building, smoothing. Processing.

But all I can do is know that space is there, and that I cannot be in it.

My own thoughts, emotions, and memories are hidden from me. Buried away. For my protection.

One day, some time ago, I needed that. I needed to be able to bury the raw sensation of being. Bury it deep, undetectable. To keep it from being infringed.

But now that I am safe from what threatened me — now that I have cleared some space — now that I want to use what I’d saved –

I find nothing.

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.

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

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

pause.

“i wish i could use the system.”

i look up.

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

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

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

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

pause.

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

silence.

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

***

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

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.

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.

Have some kitty pictures.

Buddy makes a mess on my desk.

They are fibroadenomas, which are benign lumps formed by a combination of glandular and fibrous tissue in the breast. There is some evidence they are either formed or fed by estrogen in the body — much like the endometrial implants in my pelvis. I guess I’m just too woman-y for my own good. Anybody need some spare estrogen?

The largest one, at one o’clock on the left, was 2.2cm at my last ultrasound (I am supposed to return every six months, indefinitely, to monitor their size/location to make sure nothing suspicious is going on). It is now 3.2cm, and causing enough pain that it is difficult to lie with any pressure on the breasts (on my stomach or too far to my side) or wear my normal bras.

So it’s coming out. On Wednesday.

I’m nervous. To say the least. Partly for pure vanity. There are very few areas of the body that I unequivocally like. This is one of them. More than likely, the most I’ll end up with is another scar (got plenty of those, don’t particularly care) and possibly a small dent.

I’m both moderately anxious and morbidly curious as to how this is going to turn out.

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?

My family was religious, each member to varying degrees — but their idea of religiosity was, to say the least, a somewhat unique form of the faith practiced by their fellow churchgoers. D* was probably the least religious of any of us. But he still had his ideas.

According to him, the “self” is a thing, not a person. When you refer to your self, you are not referring to you the person, but a thing that the government created so that they could have control over you. Because in Genesis, God gave man dominion over all things of the earth, but not over man. So the government devised the “self” so that they could claim control over people.

According to him, the reason we have a “driver license” instead of a “drivers license” is because in actuality there is only one person, and we are all franchised out from that person, which the government created sometime in the nineteenth century and none of us has been a person ever since. This is called “novation.”

Also, we are all “resident aliens,” because the state owns all land, meaning we are not residents but aliens on the very land we reside on.

Also, when you write your name in all capital letters, that is representative of the “self” that the government owns. Which is why names are printed in all-capitals on our birth certificates, so that the government has official control over you. So never, ever print your name in all capitals, because that means you are officially giving your “self” over to the government, and this may even be the Mark of the Beast.

It was that latter that probably got him in trouble with the court.

These were regular topics of conversation at family gatherings. I remember the Thanksgiving dinner when he gave me my first lecture on novation. I was seven or eight years old, I think. He grabbed a piece of copy paper and drew a diagram for me. I don’t know what else to say but that the diagram showed the inner workings of a mind that works in a completely different way. It wasn’t nonsense. It had logic to it, but it was its own logic — not the logic most of you are used to using.

These ideas were not a hobby for D*; they were his world view, they were primary, his truest beliefs, and he lived his life according to them.

2.

My oldest brother, G*, was born in the late 1950s, when my mother was sixteen. She was publicly kicked out of her church and her parents became hostile, leaving her with one person to rely on — her boyfriend, the father of her child. He became my mother’s first husband. Thus began her adult life. D* would come along a few years later, then my sister, whom I called Sissie.

Her husband was extremely abusive. He had very sketchy friends and apparently some involvement in certain anti-government movements in Canada. He would drug my mother and invite his friends over. He beat her to near-death a couple of times — then went into the children’s rooms, where they were aware something bad was going wrong, and calmly informed them that if they tried to help their mother, he would kill them.

My brothers have related to me the time that D* chased G* down in the back yard with a butcher’s knife — angrily — with full intent to kill him — he had feelings of inferiority under his brother. Their father broke it up when D* was on top of G*, gave them both a good beating and a good threat or two. This is how my siblings grew up.

When my brothers were in their teenage years, he died in a motorcycle crash. My sister was a bit younger, and she has recalled crying in class when the news was brought to her. But all three of them agree now that they’re glad it happened. It freed the family.

I would come along much later, by a different father, who gave my mother the choice of getting an abortion or hitting the road. She hit the road, had me at age 43, and went on to raise me alone.

3.

I grew up in a toxic family dynamic. That may be the most respectful way to describe it.

I could write a novel’s worth about my relationship with my mother. It was one of extreme emotional dependence — both ways when I was a young child — only one way when I grew older and tried to stake out small bits of independence. The more independent I became, the more intense her emotional stronghold on me, the more insidious her tactics to keep me in the reins.

My relationship with my mother was quite happy until, maybe, age twelve or so. She was sweet and caring and supportive. She encouraged me in my talents, gave me plenty of hugs and kisses, shared laughter with me… I could relate with her, I could talk with her, I could play and have fun with her.

But when I approached that age — when I began to explore my own identity, when I pulled away from her a mere inch — suddenly I felt the grip tighten — and that hug became a hold. And there was less playing, less fun. Suddenly — in very subtle ways — she began to turn on me.

4.

There may have been a time when my relationship with my mother was one of friends. But my relationship with my siblings has always been one of enemies.

My siblings were all a generation older than I, married, with children. G* and D* lived with their respective families in the two towns I grew up in, in the Central Valley. My sister lived on the northern border of Oregon, near Portland — where my mother was living when I was conceived. We didn’t get to see her family very often; once a year when we were lucky.

I was always the outsider. My brothers and sister grew up together. In a totally different world. They were decades older. Different life stages. They had come a long way, and I was just arriving on the scene.

A toxic dynamic developed, where I was the young, stupid, spoiled, care-free little thing that was getting off too easy in life. And this threatened them. They went through hell as children, but here they were, struggling, but making a life for themselves. And I was their little sister. But my life was totally divorced from theirs, a totally different realm. One they feared was rising above them.

So they had to tear me down.

And that’s what I experienced growing up. As young as I can remember. I would be trying to disappear into the couch at G*’s house as my brothers and mother commiserated about how totally wrong I was, lectured me on how things really were, agreed that I was just too young and I would come to think of things their way when I got older.

Or they would tease me about my body.

Or they would respond to a positive development in my life — an award or good grade at school, for example — by admonishing me in all the ways I was failing now or could fail in the future.

Or I would be subject to general teasing — the kind that probably goes on in most families — but with a sharp edge, a hostility to it. A tone that made me perpetually uneasy, self-conscious, doubtful and critical of myself.

Whatever it was, ultimately, there was something wrong with me.

These were my authority figures. They weren’t just casually distrusting me. They were engaging in a coordinated campaign to make sure I understood that my own thoughts, opinions, and experiences didn’t matter, weren’t trustworthy, weren’t reasonable; that I would eventually become just like them, regardless what I thought or felt right then; that I was ultimately unimportant and unlovable, that I was a nobody, that I would go nowhere in life.

They loved me. I know they did. But they also hated me. There is simply no way around it. I was devastated when I first really came to terms with that. My own brothers and sister hated me.

And all the while, they were telling me: This is love. And this is the only love you’re ever going to get.

What do you think that’s going to do to a child?

5.

My mother’s social life followed a regular, recognizable pattern.

She would make some friends. At church, doing Avon, whatever. Then over the next couple years (sometimes months), she would grow gradually closer to them — just like any ol’ person does.

But then she would hit a certain point, when those friends were approaching a closeness, when they were moving from casual friends to intimate friends.

And once they hit that point, her attitudes spun a complete 180. She began to regard them with suspicion. She would identify all these little ways, all of a sudden, that the very things she appreciated before, were signs of something sinister. If she missed a few church services and someone checked in to see how she was doing — it wasn’t a caring friend trying to help out someone sie cared about — it was a conspiracy of some sort; they were trying to dig information, to squeeze their way in, to find some way to ruin her life. If she misplaced some item at home, those people must have broken in while she was gone and taken it — anything from a garage key to a dish to a piece of scrap paper.

She became hostile. She became… resentful. She thought that these people were getting together to make her life difficult. The conspiracy would begin to grow, become more complicated by the day.

She’d begin to retreat. Stop going places. Avoid people as much as possible. No sense of trust anymore. Everyone is a potential conspirator. Everyone is an enemy.

And then — the final stage — she would move. Claim to have been “run out of town.” She would find somewhere new, where she wasn’t known — and start over.

And the whole process would begin again.

6.

It was five or six years after D*’s ordeal in prison that G* began to take an interest in the same stuff. He started reading, and reading, and reading. And the more he read, the more passionate he became about it all.

At the time, my brothers were getting into this thing about “copyrighting” your name. I think they saw it as a way to take back possession of that “self” that the government owns. I would argue to no avail.

They decided to “copyright” their names. They each placed a classified ad in the local paper declaring their rights to their names. Declaring that this name now belonged to them, and any violation of their copyright would be punishable by some amount of money. They did some more reading, and decided each violation was worth $50,000.

A little while later, G*’s name ran in the local paper for some innocuous reason I can’t remember. Just a mention, like as a parent in a graduation or engagement announcement, or some sort of meaningless news brief.

G*’s idea of rectifying the situation meant going down to the courthouse and filing a form declaring that the District Attorney was in debt to him, to the tune of a quarter million dollars, for each of five mentions of his name in the newspaper, and placed a lien on her property.

This went unnoticed for some time, until the DA tried to sell her house and found this random man had placed a lien on the property. So she took him to court.

The court case was long and involved, because a buddy of his had tried the same thing and was being tried with him. There was investigation done into the groups and writings G* and his buddy were involved in. Second court systems that claimed to have authority over the government. The buddy was trying to sell cars without registrations because that was giving yourself over to the government. They accused him of being a terrorist. The prosecutor, in his closing statement, actually began to cry loudly in front of the jury, sniffed, then apologized, saying his son was in Fallujah right now and it’s because of these people (my brother and his buddy) that people like my son are dying for their country.

He was found guilty of all charges, including a felony conspiracy charge, and sentenced to fifteen days in prison and five years probation. His buddy got a couple years in prison.

Once he got out of prison, G* decided to go to a doctor. This is when he was referred to a few specialists, and he was diagnosed with schizophrenia, bipolar disorder, GAD and major depression. He was given a couple medications, one for his fibromyalgia pain and one for his mental condition. He tried them. But he came off them soon after — maybe a couple weeks.

That is the only time either of my brothers tried to seek help for their conditions. Didn’t last long – G* was soon back to his old self — distrustful of the doctors, very resistant to treatment. He is the one, after all, who dropped a very heavy metal object on his toe, breaking it, splitting the toenail so bad it fell right off, and getting a nasty infection to go with it — and absolutely refused to go to the hospital or even a walk-in doctor.

Then again, D* is the one who passed several kidney stones without ever seeing a doctor. He looked on the internet and found several “alternative” health sites that told him which foods to eat to “flush it out.” He followed the instructions, bearing a few months of extreme pain before finally passing them. Would not see a doctor.

Never in my lifetime has he willingly seen a medical professional. He is by far the most paranoid and most distrustful of authority in my family — why would he ever trust a doctor? They might be passing along information to — well, anyone. Either way, they are a threat far more than a help, so it would be downright dangerous for him to ever step in a medical office.

Part II: The Political

Last week’s conversation in “Emails from my mother” saw many people with similar experiences. Many people who have family members with mental illness, and many people who experienced abuse from family members, and many who have experienced both.

There were, however, several disappointing turns the conversation took. And we really need to address those.

Mental illness is still widely misunderstood in our society. In popular conception, mental illness marks a person as dangerous, incommunicable, strange and weird, living in their own world, not a whole person, not the same kind of person. According to this conception, a mentally ill person has no control over their own thoughts. “The illness” controls them. Any unsavory actions are attributed to “the illness.”

There is also popular conception (which somewhat contradicts the above, but both are still commonly held together without second thought), that says that mental illness is a character flaw: that a person need only buck up, think positive, get some sun, stop being so negative, exercise, etc. and it will all just go away. The subtler, more “enlightened” form of this conception says that a mentally ill person just needs to attend therapy and get the right medication, and it will all just go away. As if it’s that easy.

As a society, we marginalize the mentally ill eagerly, without compunction. They’re scary, they’re dangerous, they’re just not like us, they need to be controlled, for their good and ours, because they are a threat to orderly society.

Except that we aren’t. People who are mentally ill are no more likely to commit violence than people who aren’t. The only factor which increased the risk of violence is substance abuse — a factor which also increases risk of violence in the non-mentally ill. And much stronger predictors of violence include being male, young, low income, recently unemployed and recently divorced or separated. For what stigma they still may face, do we assign anywhere near the same amount of “danger” to divorcees and the unemployed as we do to the mentally ill? And yet….

And yet: people with mental illness are twice as likely to be the victims of violence. Does anyone even pretend to pay attention to that?

And why might that be? Well, when people associate mentall illness with violence, they are

significantly more likely to report attitudes related to fear and dangerousness, to endorse services that coerced persons into treatment and treated them in segregated areas, to avoid persons with mental illness in social situations, and to be reluctant to help persons with mental illness.

Huh. Imagine that. People who are told that already-marginalized people are a danger to them and all that they hold dear will begin to have ideas that those marginalized folk need to be controlled, avoided, medicated, segregated…

And this attitude, this automatic assumption that mental illness makes a person violent and dangerous, is so pervasive across our society, and so deeply-held — and yet so wrong, so not true.

Don’t you think, perhaps, then, many of our other assumptions about mental illness — no matter how deeply-held, how widely-agreed-upon — might also be wrong?…

Like that they lack empathy or reasoning ability?

Or… that abuse and mental illness can be safely conflated?

I’m not even going to bother linking specific comments for that one, because there were so many, and I participated in it too. I made the same mistake. I had suffered abuse from someone with a mental illness, and I failed to realize that there were two things going on there, two different things, and that one is not an inevitable result of the other.

Try reading my stories above again. Do you see the distinction? I told stories of growing up as a family member of people with mental illness, and I told stories of growing up abused. Did you see the two different things going on when you first read them? Or did you think I was talking about the same thing the whole time?

I was called out on my next post for writing as though the mentally ill, and people with disabilities in general, were a separate group, off there, somewhere away from all of “us.”

As though people with mental health conditions are not scattered throughout the entire population. As though my best friends don’t have these conditions. As though I don’t have them! And I do!… And I even made a specific plea in that very post for people with conditions like mine to stop thinking of themselves as separate from the people the public thinks of when they hear the words “mentally ill”!

We are all subject to these attitudes, and they reach deep into the core of our world views. It takes careful, concerted effort to undo the damage done by bias, hostility and ignorance. And even with that effort, oftentimes these attitudes remain — they are woven so deeply we don’t even know that they’re there. Even when we’re looking for them.

So we need to keep a sharp eye.

One very popular idea about mental illness, which was shown throughout the “Emails” thread, is that one can separate out “the illness” from “the person” — and that any unsavory actions or behaviors can be attributed to “the illness.” That makes it OK, because it’s not the actual person inside making those decisions to act in those ways, but some vague, faceless, soulless thing that infects them.

This, of course, is a tactic to remove agency from the mentally ill person. A family member may latch onto this idea as a form of comfort, a way to identify with “the real person” inside their loved one’s body, which is separate from “the illness” which is what did things that harmed them.

But this idea exists for a purpose, and its purpose is not comfort to those of us who struggle with our families. Its purpose is to aid control of the mentally ill population. Because when their agency is removed, it makes it much easier to impose things on them, to coerce them into things, which we would never tolerate on the healthy population.

When agency is removed from a person, it makes us less likely to identify with that person as a fellow human being. We are less likely to consider how something may affect them as a human being, with a family and a community and a life of their own, which might be affected in so many ways by this restriction or that proposal.

When agency is removed, we feel much safer making decisions for someone else.

But persons with mental illness still have agency. They are whole persons, not diminished by their difference. Their illness is not simply a disruptive module overlaid on a “normal” person’s brain. It is their brain. It simply works in a way that a normal person’s brain doesn’t.

A circle is not a square with the corners cut off. It’s an entirely different shape.

And this difference is not inherently detrimental. I know a lot of people really had trouble with this concept in the “Language” thread. And it is such an alien concept to most of the world that I know people will continue to have trouble with it. But the fact remains: Difference is not inherently bad. A different body, a different brain (which, really, is a part of the body) — these things are not inherently bad just because they do not conform to the established social norm.

Please make note, there, of the key word “inherently.” Because a particular difference in body or mind might make that person’s life difficult in certain ways. Many of these are attributable not to the person and their difference itself, but to the fact that society fails to prepare itself for this difference. Many, however, are not. Some things are just shitty to experience. As I said, I have a chronic pain condition. Pain is, to say the least, unpleasant. There just isn’t any getting past that. But, as I said in the “Emails” thread,

There may still be issues with this condition that make life genuinely hard, that cause pain and hurt to that person, and we must acknowledge that…. [But] the pain and hurt is not the whole story. A thing can be both good and bad, benefit and harm at the same time. “Normalness” is such a thing, surely, as well!

Mental illness undoubtedly has negative effect on many people who live with it. Right now it is very hard to separate out how much of that is due to the illness and how much of that is because we restrict access to understanding and affirmative health care and equal access to society to such a point that almost everyone with mental illness is going to go through some shitty stuff because of it, even if their difference from the norm is relatively slight, and the effect on their life relatively light.

The focus in making their life easier, then, should not be in training the illness out of the person to make them more like “normal.” It should be identifying ways that life is hard for that person, and figuring out how to make it not-hard. That means identifying the true cause of the problem, rather than always assuming the cause is the person’s failure to conform to “normal.”

The true cause might be that the person’s brain regulates its chemicals in a way that makes life hard on the person, and so we try to modify things to bring the brain closer to a place the person will be happy with. This is a very different thing than assuming the cause is the brain regulating chemicals in a not-”normal” way, and therefore the solution is to force the brain to regulate things the “normal” way.

Then again, the true cause might be that the person doesn’t have prescription coverage, that they have trouble finding employment and therefore can’t afford the medicine they need, that there isn’t any support for living independently in their community, that people have weird ideas about them and treat them differently in social situations in such a way as to make their life very difficult.

All of these situations have different solutions, and they aren’t “make the person more like normal or else keep them away from the rest of us by whatever means possible.” Which is, unfortunately, the default solution given how we approach mental illness right now.

And this solution is only possible given that we assume things like “the illness is separable from the person.”

The thing is, many of us with mental illness would beg to differ. Our conditions are not a separate animal; they are not a “disruptive module overlaid on a normal brain;” they are us and we are them. That does not mean that one particular condition must be the single most defining thing in our lives — but it does mean that it is, however large or small, simply one aspect of our selves, one of the many things that make us, each individual person, who we are.

abbyjean put it particularly well in a private email (quoted with permission):

so i’ve been mulling about [the practice of] drawing a distinction between “things a person does of their own agency” and “things a person does because of their illness.” [...]

in my mind, that’s not a meaningful distinction, because the idea of “things i do of my own agency without influence from my illness” is a null set. i cannot separate myself or my thoughts or my motivation from my illness. the illness is so much a part of me, so much a part of my brain, that the idea of me without the illness just doesn’t make sense. imagining how i might think about or react to specific facts and situations had i never become ill, never been diagnosed, never gone through treatment, never relapsed, never been suicidal, etc, is so remote and hypothetical as to be meaningless. how might i react to a situation had i been born and raised in canada by moose hunters? i don’t know. it’s equally remote from my life and experiences, and equally irrelevant to my actual actions and thoughts and reactions.

A circle is not a square with the corners cut off. It is an entirely different shape. And both the shapes are of equal value.

Neither the circle nor the square is any better or worse, more valuable or less valuable, more whole or less whole than the other. They are both whole, they are both legitimate, they are both worthy, they both are. They just are, they are what they are, and you cannot define one in terms of the other.

This, this is what we don’t get in our discussion of any physical or mental difference, is that we cannot define that difference in terms of the “normal” default! The fact that most of the world, and even most social justice activism communities don’t realize the inherent problem with doing this, is indicative of exactly how much we have to break down here — more than I, just one person in all her imperfections, can try to encompass in one blog post.

Part III: Where the personal gets political

There was a discussion, earlier this year sometime, on Feministe about the right of people with mental illness to refuse treatment. I couldn’t read the whole thing, it was so triggering for me. And I have no desire to search out the specific post and conversation and relive how awful that was.

But I will say this, as a child who grew up in a family that was never un-affected by mental illness, and as a child who grew up under abuse. A child who is still trying to sort out everything that means to her, and will be for the rest of her life.

As a child who watched her family start and struggle, who watched her brothers go through very personal court cases, prison and probation because they had mental illness and their world did not reconcile with society’s world. As a child who watched her brother and sister seek treatment stopping and startingly, watched how that treatment affected them. As a child who observed the differing conditions of her family members throughout periods of differing amounts of support and differing amounts of (pressure/trial/tribulation). As a child who suffered worse abuse during those periods of lesser support and greater (pressure).

I would never, ever force any of my loved ones to submit to treatment they were not willing to take.

It is not a mentally ill person’s responsibility to force hirself into a square box sie does not fit in, so that the rest of the square shapes won’t be unduly affected by hir difference.

It is never a mentally ill person’s responsibility to submit to treatment they do not want to undergo because otherwise they would be a danger to somebody else.

Did you read what I wrote up there? Mentally ill persons are no likelier to perpetrate violence than mentally “healthy” persons, and in fact are twice as likely to be the victims of violence.

The only time the rate of violence rises is — surprise, surprise — when substance abuse is present.

Substance abuse is what my family turned to when the institutions that were supposed to be supporting them were instead working against them.

Substance abuse is what my family turned to when the rest of the world was treating them with disdain for being different.

Substance abuse is what my family turned to when they had no other options left, because society took them all away.

When people with mental illness are supported, when there is an affirmative environment where they can seek help for the problems they face participating in society and there are ways to address those problems in a way that respects their wholeness and humanity and agency — when the rest of the world is willing to be there with a supportive hand when they reach for one, not bearing down an iron fist against their wishes –

– then — guess what — mental illness doesn’t have to be a Big Scary Deal.

The term disability is not a static one but is the result of a person–environment interaction. The less supportive the physical and social environment, the greater the amount of disability. (source)

I know, it’s a radical idea:

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

Instead, we have sober, reasonable discussions about whether or not mentally ill people are allowed to own their own minds and bodies. We have sober, reasonable discussions about whether their Obvious Danger To The Rest Of Us Important People is too great to bother respecting their personhood and bodily autonomy.

We have removed their agency, and thus feel comfortable making decisions for them.

When instead, maybe what we could do is — I don’t know, recognize the diversity in neural makeup? Recognize that people have different conceptions of The World and How It Works, have different approaches to dealing with that world they conceive? And that their approach isn’t inherently worse just because it ends up conflicting with the majority view — that maybe that conflict isn’t a sign of their difference having to be bad or wrong?

And let people have their damn differences, and when those conflicts come up, manage them. In a way that respects yes, the person is different from the norm. But guess what? The norm is different from them. The fact that there IS a difference does not bestow upon the different parties any particular worth or value. It just is. It just is.

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

Welcome to the neighborhood garden.

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

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

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

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

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

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

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

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.

***

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.

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.

I never fancied myself a photographer, though, as a child. I colored and painted and sketched; I played with ceramics and sculpting clay, with yarns and plastics and pom-poms. All of that Meant Something; it was not what I did, but Who I Was.

And yet I played with photography continually; my mother would buy a roll of film and I’d have it filled within the hour. I loved to pick up my twenty-dollar Wal Mart 35mm camera, to follow the cats around the house taking pictures. It was so satisfying, the snap and rolling noises, removing the film at the end, excitedly filling out the film envelope at the store and waiting patiently for the week we could afford to get the photos developed — then pawing through the stacks of full envelopes, and breaking the seal, the anticipation of what might lie inside…

And yet I never imagined that I could call myself a photographer. All of this, it was not Who I Was. It was just something I did. It didn’t Mean Something.

I don’t know why.

Late in high school, just as my disability was setting in, I took a strong interest in photography. I had been working with the school newspaper, which was feeding my love of visual design, which had been developing since age twelve when I got a computer and started making my own web pages. I was the tech and copy editor(s), so much of the visual presentation of the paper was in my hands. And I loved it.

Photography was something that caught my eye: the art of photography has a strong basis in design concepts, and yet it resulted in something so much more … classic. Free-standing. Boundless.

I saved money, and did research, and between Christmas, my birthday, and graduation gifts in my senior year, I was able to purchase a “prosumer” level digital camera — not an SLR, but offering many more creative controls than your typical snapshot camera.

March of 2004 is when that small black beauty finally sat in my eager hands. That same month is also when I was just beginning to recover from the most severe and serious flare I had experienced, which had me out of school for several weeks that January, then kept from attending school continuously for some time afterward. I was just getting on my feet again that March, just beginning to catch up with everything I had missed until that point, just beginning to collect all of the make-up work I would have to do to get my report card out of the F graveyard… my very last semester of school.

I took comfort in this new little device. It was something to learn which did not weigh down my consciousness, fog up my comprehension. This was not book learning; it was tactile and visual, and it came naturally, guiding the movement of my fingers and positioning of my body to obtain fresh angles, and even the mathematical balancing, shutter speed and f-stop and film speed, was intuitive.

And it cost nothing, once I had the camera. No rolls of film, no waiting for developing. Just space on my hard drive.

My camera would become my best friend as I looked ahead to college, where I was to face multiple health crises and major life changes. Whenever I was not well, I had something to take comfort in, to help me escape from hostile reality.

There is something about photography that exceeds the intellect. Oh, you use your knowledge and intellectual ability to manipulate all the mechanics and mathematics involved. But it is so much different, so far from the problem sheets of school, occupying a different space in the brain, utlizing different mental muscles. It is grounded in that intellect, but it sprouts forth and grows endlessly, obeying no boundaries, becoming whatever you wish to make it be. No intellectual space can hold the zone I enter when I have that camera in hand.

My disability does affect this art. Most so, my hands are shaky, never steady, always moving, and with occasional spasms. I had so much trouble early on, finding it nearly impossible to take pictures requiring a low shutter speed (below 1/30). I couldn’t afford the beautiful machines that handled higher ISOs gracefully, which would have allowed me to play more within this low shutter speed situation. But they were beyond my reach — still are, really.

It has taken me years to learn how to compensate for this. Years and years of failed attempts, frustration, disappointment, self-criticism. And it has come only little by little. And it is not complete.

But there is a physical knowledge there, and my muscles are being trained to hold steady in certain places, certain ways. I have learned to brace against a wall, chair, pole or rail, or even my own body. I have learned tricks: to extend the LCD screen out to the side, so that I can hold the camera at both ends, keeping it safer from unintended movement.

I cannot steady my entire body. It is simply not a trick available to me. But I am learning where to focus my energies, which muscles to use which ways.

And my photos are turning out much crisper, clearer.

This comforts me. When my art is crisp, clean, readable, I feel the same inside. When it is foggy, unfocused, poor quality, I feel the same inside. I feel frustrated at my inability to communicate what is going on inside this complex body to the outside world.

Learning how to do that more effectively… that is a life-long lesson.

A unit of time whose literal length is constantly changing due to rapid miscalculations of a computer wielding an operating system developed by Microsoft (i.e. Windows 95).

My husband had the brilliant idea to apply it to me and my various disabilities: the Manda Minute. To wit, “We’ll be out the door in five minutes!” will probably mean twenty, but it will change constantly as time progresses, and could end up being only eight minutes, or even — thought very rarely — two.

I try to be as honest as I can about time estimates, but there are so many fluctuating considerations and variables that it’s almost impossible to know for sure. I overestimate as it is, but chronic overestimation makes guessing useless anyway — if I say twenty minutes when it’s actually going to be five, what good am I doing anyone? and I’m going to be screwing with the medicine I have to plan out, the periods of activity and rest, and so forth.

Welcome to my life.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?