So You Think You Can Dance (a poem for the Random Man in my inbox)

Oh, Honey, NO.

Not here
Not me
Not today
… or any other, for that matter

Yeah, there’s a dance
and yeah
my round ass is shaking
to the tune that’s playing
but nobody invited you
and I sure don’t want
your skeeze
in my dance space
Like Jennifer Grey
and her spaghetti arms
not knowing
what the fuck she was doing
but trying hard to act
just like she did

See
I *been* dancing this dance
long
long
before you
came along
and I know the tune
I know the steps
this tempo
runs in my blood
frantic
pulsing
pounding
flowing
invading already
all without your
pathetic assistance

See
THIS dance is a dance
you don’t know
you *can’t* know
you never ***had*** to do it before
even when your legs were aching
and your back was sore
even when your heart was tired
and your mind was screaming out
no more
*no more*
*NO MORE*
Even when
all you really ever wanted
was to lie down
and make the spinning stop
and silence the beat

But I did
we did
we danced
because we had to
danced
until our feet bled
until our legs were weak
like gelatin
tears flowing
rage-spittle flying
dancing
for our fucking lives
for the lives
of husbands and wives
of children and parents
of sisters
brothers
friends
lovers
cousins
and kin not even blood

And now you
wanna storm in here
while I’m dancing
demanding
that I teach you the steps
then spouting off
about how these steps are wrong
how the dance would be
done better
the way *you* want to see it
about how
you ought to get
a spot in the pattern
and be able
to change the moves
slow down the tempo
because your tender feet-
unaccustomed to
the stamping
stomping
hard-driving beat-
can’t handle these
grunts of effort
the sweat flying
from our cheeks
or are those tears of exhaustion
frustration
rage
You
and your tender feet
know nothing of this dance
because luck
because
accident of birth
which made you white
made you born-man called-man
made you comfortable
made you straight
made you healthy
because of *nothing* you ***did***

you know nothing
but that privilege shuffle
with its mellow groove
and its easy softness

And we ain’t got time
for your feet to catch up
because we gotta keep dancing
keep stomping
keep stamping
keep spinning

because this dance
is the only way we got
to change the tune
to slow it down
we gotta dance
until we can all shuffle
or maybe find some ditty
somewhere in between
a nice waltz, perhaps
that won’t crack our bones
on the downbeat

we ain’t got time
to teach you all the steps
and how they came
to be part of the pattern
and we *sure*
ain’t got time
to argue you
out of your wrong
out of your sweet, easy shuffle
that keeps you from seeing
the horror and pain
the blood and the death
that are
that have always been
a part of this dance
that ain’t
fucking
yours

Nah, homeskillet.

Shuffle your shuffle
right on outta here
and come back when you learned
come back when you worked for it
come back when you got some way
to make this easier
not for your shuffling feet
but for our bleeding ones
or when you’re ready
to bleed with us
for us
until we’re all doing the same dance

Don’t come around here
demanding I do your dance your way
when my ass been shaking
since I was born.

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Why I Won’t Continue to Argue With You

I am a socially aware person. Which, if labels are to be trotted out, most often translates to “feminist,” “Social Justice Warrior,” “liberal hack,” “slacktivist,” or “Feminazi scum,” depending entirely on the beliefs of the speaker. With the exception of “feminazi” – which is utterly absurd and particularly hateful because no feminist or feminist group ever imprisoned and tortured and killed millions of human beings for their differences – I wear each one with pride. I know what they mean, what they’re intended to mean, and that the resentment behind them often indicates the frustration of the ignorant with inevitable social progress.

I didn’t just jump on this “bandwagon,” as so many opponents would call it, on a whim. I didn’t become this shining example of a “SJW” overnight. I got here through a very logical progression of questioning, seeking answers, and finding knowledge. It was an almost organic evolution. It was growth, and growth doesn’t happen without impetus, or all at once.

plant watering

It started when I was very young. I remember playing basketball in the Carolina summer heat, with my cousins, who were mostly boys. The hotter it got, the more shirts came flying off, to be discarded next to the red clay “court” in the backyard of the cousin who led the games. I was about six or seven. I hadn’t been taught anything about the differences between girls and boys, let alone about sex or sexuality. I got hot, too. I took my shirt off, too. And it was no big deal to me, or to the half dozen boys with whom I played. I took my shirt off, and ran around with the same sweaty, dirty abandon as all the other kids, and nobody cared. Until my father came running outside, red-faced and yelling. What the heck was I thinking??? What was the matter with me? He yelled and made me put my shirt back on, and go home, but he never explained why. From that day forward, I knew that girls couldn’t do everything that boys could do. That girls would get into trouble for things about which boys never had  to think twice.

I was also only seven years old when my family taught me to be a racist, and only about ten when I started to question that belief system. I found that I had a drive to learn more about other people, about how they lived in this world we shared, about how their experiences in that world were different from my own. I visited the school library. I read everything they had that related to my questions, then moved on to the county library. I talked to people. I didn’t know anyone who wasn’t, like me, white and protestant, at the time, but I asked questions, anyway. The answers I got were… dissatisfying. My parents and my preacher gave me biblical justifications for racism. So, I read the bible, cover to cover, for the first time. What I found was that the Bible doesn’t justify racism, yet it repeatedly urges us to love one another, regardless of our differences. I asked my teachers. Only one had an response that didn’t amount to a lackadaisical shrug of the shoulders. She pointed me in the direction of some amazing literature written by black authors, about their experience in this world. I devoured every one. Armed with this knowledge, I started questioning people, again. My parents eventually just shushed me with the equivalent of Because we said so. Now stop pestering us. My preacher brushed me off the same way.

I had encountered the first revelation of growing up: The grown-ups didn’t know everything, after all. They weren’t infallible. They could be wrong. But I’d also learned something of the utmost importance. I didn’t have to settle for their non-answers. There was a whole world out there, full of answers. I just had to find them for myself.

library

The next stage of this growth was related to sexuality. In a church where they managed to justify racism with bible verses, it’s no surprise that homosexuality was also sternly frowned-upon. This was problematic, for me. See, I was in kindergarten when I developed my first celebrity crush – on a woman. I was in first grade when I had my first real-life crush – on a girl. I later developed crushes on boys, too, both in real life and on TV (Doogie Howser, anybody?), but by then, I knew I was… different. I’d never associated my differences with “The Gays,” then. That’s how they were always referenced. Implied capital letters, and sneery italics in my head. The Gays. Also occasionally known as HommaSECKshuls. I didn’t connect the descriptions of those people with the difference I knew existed between me and other people, because of the way those people were described. Immoral. Sneaky. Dishonest. Sleazy. Perverted. Dangerous. Likely to molest small children and family pets, and steal the family television, while they were at it. I knew that wasn’t me, and hadn’t yet connected those labels to who I was.

I was in my teens before I knew what lesbian meant, and the first time I heard the word bisexual I was a freshman in high school. And it fit, for me, in a simple way that nothing else ever had. That was when the derogatory use of The Gays and HommaSECKshuls connected, in my mind, with me. This time, though, I knew it may be dangerous to ask questions of the same people. I knew where to find answers, and went looking. What I discovered was that there was no logical reason for anyone to hate or fear or abuse other people, based solely on their sexual orientation. I also discovered a need to hide. To conceal who I was. Until I couldn’t, anymore. Until I accidentally outed myself to my school and my family. I’ve since discovered that a prejudice against bisexual people exists in more than just the straight community. Like the other prejudices I’d discovered, like all prejudice, it is illogical. I know this not only because I happen to be bisexual, but because I did with that what I always did, when faced with such things; I educated myself.

It’s the method I’ve developed, over the course of a lifetime, when faced with beliefs that don’t make sense to me, for understanding those beliefs, and developing my own. Research, questioning, debating, reading, and learning as much as I can. Informing my opinion.

So when I encountered such concepts as privilege, institutionalized racism, rape culture, misogyny, transphobia, and patriarchy, I approached those in the same way. I talked to people who knew more than I did. I talked to people who believed those things, to understand where those beliefs, however problematic, originated. I researched. Fortunately, by this point, I had access to all the information I could ever want, via the internet. I read academic articles, first-hand accounts, editorials, and blog posts. I devoured research studies and statistics, conducted and compiled by everyone from accredited universities to the Department of Justice to the Census Bureau. I ordered non-fiction books about the prison industrial complex, and civil rights battles, about the struggle for LGBT rights, about the ways in which US society is predisposed to actively disadvantage and oppress women, minority races, immigrants, and LGBT individuals. I read first-hand accounts and historical documents about protests and movements, the reasons they happened, and the motives of both those involved and those opposed. I participated in debates with other people who were seeking answers to the same questions. I sought out knowledge and understanding. I informed my opinion.

Which brings me to the point of this whole thing, far too late for a TL:DR warning. I do not disagree that everyone has a right to their opinion. You have the right to believe whatever you like. But we’re not talking about the existence of fairies in a J.M. Barrie story, here; your belief does not make a thing true. You can’t clap your hands loudly enough for racism or misogyny or homophobia to be a logical response to the world. You can’t generalize your personal feelings or experience, as a single human being, to all of humanity.

I am glad to discuss any of those topics, at great length, and mostly without rancor. They’re a particular passion of mine, and we all love to talk about the things that inspire that passion. What I am not willing to do is give an uninformed opinion equal weight to one that is based on a lifetime of research, study, growth, and learning. If you haven’t spent at least some tangible amount of time and effort learning about these things, chances are pretty good that I know more than you, about those specific topics. If you want to learn more, to inform your opinion, I will be happy to point you in the right direction to do so. To a limited extent, I will even be happy to teach you, myself. What I will not do, though, no matter how often or how loudly you rail, is let you shout down those years of hard-earned understanding with your gut feeling, your very deeply tinted personal lens, your unfounded and uninformed beliefs. What I will not do is engage with you, when you don’t want to learn, when you aren’t interested in understanding, when all you want to do is be right, without any basis in fact, without any research, without any logical basis for your determination of rightness, at all.

My refusal to discuss those things with you doesn’t necessarily mean that I don’t like you. That I think less of you, as a person. It simply means that, until and unless your opinion becomes informed, I recognize the pointlessness of engaging with you on those topics. Doing so would be like inviting you to play soccer, when you’ve never played, then agreeing to play by the rules that you make up as we go along, and further agreeing that doing so makes perfect sense. It would be absurd, counterproductive, and demeaning to all the other people playing who took the time to learn the rules and practice, before that game began.

You do have every right to your opinion. I also have every right to refuse to discuss opinions that are uninformed, with people who refuse all attempts to learn.

not listening

The problem with “drama”

Drama. It’s a term we hear quite often, in recent years. As defined by the Oxford English Dictionary, in this context:

An exciting, emotional, or unexpected series of events or set of circumstances

As defined by Merriam Webster, in this context:

a :  a state, situation, or series of events involving interesting or intense conflict of forces

b:  dramatic state, effect, or quality <the drama of the courtroom proceedings>

If we’re speaking literally, then, drama is really just a part of life, for everyone. Giving birth is drama. Dealing with a crying baby is drama. Getting married, beginning or ending a relationship or job, getting a promotion or a raise, being stuck in traffic when you’re on your way to something important, the loss of a loved one or pet, the first day of school, work, or marriage, a wedding, a funeral, a cat chasing a robot dog across your living room floor. All of those things qualify as drama, and all of them are perfectly normal, mostly necessary or unavoidable, parts of life. Without drama, there would be no life.

Recently, though, the word “drama” has taken on much more negative connotations. In order to explore those, we need to step into a slightly seedier (if occasionally more amusing) corner of the internet.

From urbandictionary:

The…

Wait… Jesus Christ. That’s a rather… dramatic… discovery. I had to go down thirteen definitions, just to find one that wasn’t completely loaded with misogyny, either in the definition, or in the examples. And number thirteen is so poorly written, I refuse to include it, here.

So, I guess we’ll just start with the number one definition:

Something women and especialy [sic] teenage girls thrive on. consisting of any number of situations that have an easy solution, wich [sic] would bring a fairly good outcome, but these girls choose another, shitty, bad way to deal with it, again consisting of backstabbing, blackmailing/gossiping/betraying their friends, or the all-too-common “I want to break up with him but i still love him!”
it drives men and what i like to call “normal” girls nuts.

Unfortunately, when people talk about drama, these days, the above definition is usually what they’re intending to convey. Unfortunately, it is very much a gendered issue. In fact, looking through the top 35 definitions, there are over 50 blatant misogynist, ableist, or homophobic slurs, or characterizations of women and girls as the main sources of all the “drama,” always.

Which is telling, really, and speaks directly to the point I wanted to make, when I opened up this post. I’d like to include the first definition listed, at number twenty-three, which I feel adequately describes what is actually going on, when someone tosses out the word “drama,” in conversation, especially around sensitive or controversial topics:

A way of referring to problems and other normal complications in life, typically of others; painting them in a negative light so that the person speaking doesn’t come off as being a self-interested jerk even though doing this inherently determines them to be so.

This definition is actually much closer to the truth, I think.

When victims of sexual assault, domestic violence, sexual harassment, or blatant misogyny speak out, or when someone speaks out on their behalf, there’s almost a guarantee that someone, somewhere, will accuse them of being drama queens or drama llamas, or of stirring up drama, or having too much drama, or of causing drama. Often, the people using the term will claim that the person’s tone is the problem, or their personality, or their past.

What this indicates is that the issues to which you are trying to draw necessary attention – issues like domestic violence, rape, sexual assault, and sexual harassment – are uncomfortable for them to hear. It indicates that the person hearing about these important issues doesn’t want to face up to the reality of the problems, doesn’t want to admit that, perhaps, there’s something they may need to do, or change, or put some effort and empathy into, in order to fix the problem.

What it amounts to is fear. They’re afraid of things changing. More often than not, they are comfortable with the way things are. Either the situation isn’t harming them, personally, or they have internalized the harm to a point where they are unable to see how damaging it is, to them, to others, and to their culture as a whole. Or, perhaps for some, they are well aware of the truth of the matter, and don’t want anyone to take what you’re saying seriously, because it might reveal them to be the abusers, rapists, harassers, or violators that they are.

It’s fear, manifesting as intimidation, and it is one of the favorite weapons in the arsenal of the victim blamers, abusers, misogynists, and cowards of the world. It is almost exclusively used against marginalized or victimized people, to discredit them, to silence them, to shame them into not saying things that might make somebody look bad. To make them shut up. To make them question themselves. It’s their way of saying,

STAHP!! Stop saying these things that I don’t want to hear about! Stop trying to take away my illusions or my nice-person mask! Stop telling me things that make me ashamed of things I might have done, or might do in the future! Stop making me have to actually think about what my actions, my choices, my words, or the actions, words, or choices of the people I support and defend, might be doing to other people! Stop pointing out my utter lack of empathy for my fellow human beings!

The worst of it is, in many situations, it works. Often, a victim will speak up to a community, to tell them that their policies aren’t good enough to keep the members safe, or they will give an account of something that another community member did to them, which caused harm, or they will notice a Missing Stair, and ask that someone make the needed repairs. They will be met by an onslaught of criticism, insults, attacks, and threats. They will be accused of being drama queens. They might face entire groups of people, loudly demanding that they stop lying, stop stirring things up, stop causing trouble, stop making noise. They will be met with such ferocious resistance, at a time when they are already vulnerable and raw and afraid… and they will back down. They’ll shut up. They’ll stop trying to draw attention to the problems that need to be recognized and addressed. Sometimes, they’ll simply pull away from the community in which the problems exist, often losing important social support networks in the process. Sometimes, they will internalize what is being thrown their way, and begin to doubt themselves, blame themselves, and by extension, begin to blame other victims, in later problematic situations.

That’s just not okay. Silencing and shaming people who are speaking to legitimate issues, by using the word “drama” as a weapon, is not okay.

So, do me a favor. Stop that. Have a little more empathy.Understand that anyone reporting someone or something which is causing harm isn’t a “drama queen.” They’re a brave, hopeful, empathetic person, trying to keep other people from being harmed, often in ways in which they already have been. They deserve your attention. They deserve to not be invalidated with words like “drama.” They deserve your gratitude, instead of your ridicule.

When you say, I don’t do drama, what I hear is, I am more invested in being comfortably ignorant, and utterly selfish, than I am in showing empathy to my fellow human beings, or taking some responsibility for shaping the culture in which I live. 

And I think that most of us want to be better than that. Don’t you?

How not to be a friend to an escaped abuse victim

When I left my abusive ex, I also decided to make it very clear to the community in which he was participating that he was a danger. See, I discovered that I wasn’t the only one he’d abused. In fact, I’d say anyone would be hard-pressed to find anyone with whom he’d ever been in a relationship, whom he had not abused. And the people to whom I was giving warnings were people I cared about a great deal. People I knew, people I’d loved as chosen family, friends, and part of a community I once cherished and called home.

This all set me on a path to consent activism. I’ve been doing that ever since.

One of the most hurtful things to ever come out of that was a message I received from a friend. At the time, I considered her my best friend. It was a message in which she explicitly withdrew her support for me, and what I was doing. It led to a conversation in which she very clearly stated that she didn’t believe I was ‘actually’ abused. In which she described what was the result of a typical behavior, by abuse victims – namely, covering up for their abuser, until the abuse is over and they are safe – as the reason she didn’t believe that I had been in an abusive relationship.

What seems to be happening is all these little changes and edits are merging together to create an inhuman monster out of a guy who is merely a selfish loser douchebag.

And there were no changes. No edits. No creation of anything. Only revelation of the way things actually went down, when I was in a place too frightening to be able to speak out.

I wrote the following, then, as a response to every single piece of it that she brought up, claiming I was lying. Just recounting it, now, leaves me trembling and aching, not only because of what he did, but because of how the loss of my friend hurt me.

What follows was originally posted elsewhere, January 9, 2014. I almost chose to simply delete it, but it is very illustrative of the things you shouldn’t do, as a friend to an abuse victim seeking support. 

I was warned about the ex. His ex warned me. Her friends warned me. I didn’t listen. That is on me.

Of course, he made it a very convincing case that she was psycho, and all her friends were just jumping on a bandwagon, but I did make the decision.

I agreed to move him into my home. By the time I did so, I had determined to put as happy a face as possible on it, because I knew some of my friends would be trying to poke holes, and I didn’t want holes poked. I was in dire straits, and needed this to work. Which, of course, he well knew.

Of course, by then, I’d been through a long campaign to convince me it would be okay, and every concern I brought up was either pooh-poohed or brushed aside or handled with explanations that rang true at the time. He decided that was what he wanted long before I got on board. There’s a witness to that, in case my credibility is that far gone in your eyes.

But I did make the decisions, both to agree to it, and to keep perceptive friends from poking holes. I needed this to be good, and he was saying all the right things. I didn’t want holes. I didn’t want to see holes.

He and I, together, figured out a way to trigger my seizures for a purpose. I knew one was coming, sometime around the court date I had for my stepfather’s bond reduction hearing, and I couldn’t afford to have a seizure in court, or to be in a brain-fog, the day of. This kind of triggering worked by me lying down on the bed, and him flickering lights in my face. We used it a handful of times for important occasions, for times when I had to be okay, but my seizures would probably get in the way of that. Triggering a seizure in time for me to recover kept me  from worrying about the seizure happening in the midst of those important things.

I never believed he would take that to a different place. I never even imagined he would figure out that stress triggers could be manufactured, if he just didn’t give me an avenue to walk away, and yelled and cursed and called names and got all up in my face with a barrage that wouldn’t stop until I spazzed out, seized, and later forgot the fight. I never imagined anyone would do something like that. I mean, who would?

But, because I cooperated with it the first way, I must have been on board with the second, right? …even though I wasn’t sure it was happening until it had been going on for months? No. But hey, I was on board with one, so why not the other, right? This seems to support the whole idea of Well, she let me kiss her, so why did I need to worry about getting consent to do more?

Yes. I actively encouraged him to find other partners. At first, I did this without knowing how bad things really were. How awful he really was. I was simply happy to be experiencing compersion for the first time, and I liked the women he was meeting.

Then I started having a much harder time not seeing what he was. Much harder. I was still entirely on board with him being with other people, but for much more selfish reasons. I needed a break, now and then. I needed rest that wasn’t me sleeping with one eye open, and time in my house that wasn’t eggshells and hot coals all the time. Maybe that was “stupid or cruel,” as you called it. Perhaps I should have just fought tooth and nail against him getting what he wanted, to protect all those women from the things I was already suffering. I was too weak. I was too worn down. I was too afraid. Maybe I even hoped that some of the bad would stop, if he got his girl, and got back to the NRE that allowed our first two or three months to be okay.

I didn’t just let it happen, though. I warned them. ALL of them, personally, if I had any contact information at all. I warned them of badness in general, and gave specific details, when appropriate. I’ve maintained friendships with the two most notable ones, to this day. I call them friends. I’m pretty sure they call me the same. Both have mentioned red flags that came up, that they didn’t ignore because of things I said. Both have thanked me for making them aware enough to do so. But hey. I let him date them, right? That must prove he wasn’t abusing me. Uh-huh. Sure.

I was stupid and vulnerable and I loved the man he showed me, far past the point when his actions, and the abuse, had made it clear that man was never coming back, at least not for me, no matter how ‘good’ I was, how compliant.

I covered up the abuse because I was scared. He’d charmed the pants off a very close friend. Hell, he is a great friend, as long as you don’t get any closer than that. I was assured that no one would believe me, and he proved it with her. The more time they spent together, the less she seemed to care about me. I became paranoid. I stopped telling any of the bad stuff to anyone that he might talk to, though I had to sneak to talk to people he didn’t like. But hey, I chose to be there, right? That must mean there wasn’t any abuse, right? I mean, victims of domestic violence and emotional abuse don’t ever choose to stay with their abusers, right?

I smiled and acted like everything was hunky-dory, made excuses for his behavior, explained things in the best possible light…

I kept doing this, even when he was throwing hands full of pennies at the person who cut him off on the highway, after chasing them down and passing them at 90 mph. I kept doing this even when he broke my daughter’s cello in a fit of rage. I kept doing this even when he took the dinner I’d cooked him and threw it across the room, breaking the plate, scaring the kids, and leaving food on the floor that wasn’t safe for the dog to eat, then raking the carpet like a madman, when I insisted that he clean it up. I kept doing this when he was telling me what a bitch my daughter was, and what a cunt I was and how lazy and useless and worthless and crazy I was.

I kept doing this right up until that became impossible, which happened pretty much all at once.

I went to a con with him. Where he violated my consent, then spent three days laying on the thickest coats of victim-blaming bullshit you could possibly imagine, before posting a bogus apology online, trying to save face with the community, that he hadn’t even given to me, in the next room, in person. But hey. I chose to play with him, right? That must mean that he wasn’t abusive, right?

So. There you go. All the things that make me either a liar, or a willing participant in my own abuse. Since they’ve been thrown in my face, I thought I may as well own it all.

Do me a favor, okay? If any of ^that^ makes you think of me as a liar, or a manipulator, or whatever other hurtful words you wanna toss my way, just keep it to yourself. Un-friend me. I don’t even want to know why, anymore.

You wanna kick somebody? Well, it’s the kink community, after all. I wish you luck finding someone who’s into that sort of thing. Me? I’m not.

When I say, “I can’t”

… I mean that I can’t. Whatever it is, I am absolutely incapable of doing it.

There’s this thing that happens, for me, since the seizures actually started having an impact. Too much auditory stimulation makes my head all splodey. I can’t listen to music above a very soft level, and simultaneously carry on a conversation. I can’t chit chat at a concert. I can’t keep up with a discussion while watching TV. I can’t handle being involved in a conversation with people who talk over others, monopolize conversation and do not grasp the natural give-and-take of communication.

CAN’T.

If at all possible, I get rid of one type of stimulation, to let another in. I turn off the music, or pause the movie, or ask my friend to hold the conversation until the concert is over. I ask people involved in conversations with me to be courteous, of me and one another.

When that isn’t possible? I have to shut something out. I have to ignore something. I have to somehow close down that part of my brain, or I go bugnuts.

It’s a physiological thing, over which I have very little control. It leads to me being somewhat easily overwhelmed or frustrated. I’m sure it is frustrating for those who are close to me. Fuck. It’s hell, for me. I didn’t ask for this, I didn’t choose it, and I don’t fucking want it, but I’ve got it, anyway. So, I deal the best that I can.

Part of that is stating that I need something to stop, or to have a break in the onslaught, for a bit. When I do that, I need to be heard. I need for the conversation or music or wtf-ever to fucking STOP. RIGHT. NOW.

NOT when you finish your thought… or the next one… or the one after that. Not when the song ends.

NOW.

If you can’t manage to do that, after repeated reminders, I cannot, for the sake of my own health, be around you. Period.

Can. Not.

Originally posted elsewhere, December 24, 2013

Alien Abduction

(originally posted elsewhere, February 2, 2013)

Imagine, for a moment, that a part of you – not the whole you, not your skin or hair or limbs or torso, not your body – could be abducted by aliens. Your consciousness, your brain, your mind, your heart, whatever you want to call it. All the parts of you that make you who you are.

Now, imagine there are two teams of aliens. We’ll call them the extraction team, and the demolition crew. The extraction team separates the consciousness from the body. They take it out, and put it in suspended animation, then they sit back and smoke a fine cigar, and watch the demolition crew at work, for a bit.

The demolition crew picks up the physical you, and rolls you down a long, narrow, enclosed flight of stairs, head over heels. They drag you by your feet across a few yards of carpet, or sometimes even through several rooms, and slam you into every wall, protruding corner, door, and piece of furniture along the way. Then, they pummel you with big, uneven wooden clubs until they get bored. They might stick a few oscillating icepicks into your skull, or shove you into a corner, or half under a dresser, or up under a desk or table or chair or cabinet. They might punch you in the eye, or bloody your nose with a two-by-four, or smash your lip into your teeth, repeatedly, until it’s bleeding and swollen and even your teeth are sensitive, or rub sandpaper on any exposed part of your body, until it’s pink and raw. They may twist your ankle, or pull your arm, hip, leg, neck, or back out of joint. They might even make you piss yourself.

Then, they animate just your body, and make you do a one hour, high impact workout, to amuse the extraction team while they relax.

Next, as the extraction team is finishing up their cigars, the demolition crew waits on them for the next bit. It’s a team effort, you see.

They return to the consciousness bit of you, and decide how to fuck it up. They really mix it up, here. Maybe they roll dice, or flip a coin, or rock-paper-scissors. They will almost certainly steal your memories of the time leading up to the abduction. The only question is, how far back will they go? Ten minutes? Forty-five? An hour? Sixteen of them? It depends entirely on their whims. Then, they might take away some of whatever it is that makes you able to focus, so that you zone out on people during conversations. It could be that they leave that alone, and take away your short-term memory for a while, or your ability to remember the things you have to do, or a five-item grocery list, or the plans you made over the phone yesterday, to have dinner with a friend today, or the list of tasks you’re supposed to accomplish, tomorrow. Hell, they might even take away your ability to remember that there ever was a list, so writing things down may not help. They might take the names of the last fifteen-or-so people you’ve met. They might take your ability to multi-task, or to focus on any given task while people around you are talking. They may take away your ability to find simple nouns, like bread or door, and decide to keep it for a while. It’s shiny, after all, and the little bastards are like magpies.

When they’re done fucking around with their own personal science experiment – you – the extraction team puts the two parts of you back together again. The two teams shake hands, and walk out of the room, knowing you’ll regain consciousness in a few minutes.

It takes you a couple of days, after the abduction, to get back to your baseline level of pain and confusion, let alone anything approaching pain-free and coherent and competent.

And the kicker? You know they’re coming back – and soon. If you’re really lucky, you might get four days from one abduction to the next, but they’ve been doing this for at least four years. They’re not likely to change it up much, now. After all, why change something that’s accomplishing your goals of crashing the party, really fucking things up, and leaving chaos and pain in your wake? So, they will most definitely be returning in a few days. About the time you start to think you’ve recovered enough to be an active and effective participant in your life, they’ll decide you’re getting a bit uppity, and that they need to take you down a peg or two. Four or five days (if nothing particularly stressful happens, and you don’t catch the flu, or a stomach bug, or a particularly persistent case of insomnia). Then they’ll be back, and the whole process repeats.

Forever.

You’ll almost never know precisely when it’s coming, although you occasionally get a few minutes warning. Not that bracing yourself will do any good. They’re going to take you down, anyway. They’re inevitable as death and taxes, and as inexorable as the sunset.

Can you see it? More importantly, can you feel it?

No? Well, then, move along. Nothing to see here.

Yes? Well, welcome to my world. That’s what it’s like, to have a tonic-clonic (in layman’s terms, Grand Mal) seizure about every four or five days. That is my life, and has been for going on since 2008.

I’m not asking for, nor do I want, pity. I’ve done pretty well at managing this, and not letting it control my life, for a while now. It was a long process, but I’ve figured out what my limitations are, what I can and can’t do, and how to change what few things are in my power to change, to make it less painful, less of an impediment, to myself and to others. When these first started, and they were much further apart, I’d be incapable of getting out of the bed for days. Now, while it still fucks me up as much as it ever did, I generally just push through whatever needs to be done, anyway. I get what’s important done, and have learned to let go of the rest, if at all possible, until I am feeling well enough to try to catch up. Preferably before the next seizure hits. I ask for help, when I’m coherent enough to recognize that someone can help me with whatever it is I need to do, and remember whatever that might be.

There is seldom a time when I am not exhausted and hurting. I’ve experienced many, many different kinds of pain. Back pain since I was 11, when the car I was riding in got plowed by a semi. Labor and childbirth, four times. Being beaten (not in the fun, consensual way) on a regular basis. Toothaches. Sporadic sciatica. Migraines that lasted for days, sometimes, in spite of medicine. The soreness of a seven-mile walk and hour-long workout. Five major car accidents. A twice-broken nose. And, of course, various types of S&M.

Each and every one of those pales in comparison to what I feel like the day after. I don’t know how much of that is the actual physical pain, and how much is the fact that I never get to fully recover, before the next one sets in.

I HATE ‘not braining,’ as we usually put it, here. My mind has always been the one part of me I valued more than any other, and it’s slipping. Not being able to do a cohesive, well-written research paper pains me more than I can describe. It’s endlessly frustrating to realize, over and over again, that I’ve forgotten something, or that the stupid word I want is trapped in my stupid brain, and I don’t have the key to unlock it and let it out. It makes me feel like a shitty person when I have to leave the room, or ask others to be quiet, or ask them to leave the room, until I can complete whatever task I am working on and can get a handle on that panicky, overwhelmed feeling.

I hate that I can’t be as independent and autonomous as I once was. I would so love to just decide I want to go for a drive, and go. I would love to have a job, again, and a reason to get out of my pjs every morning, and the income and social interaction that comes with it. I’d be happy to just not be so damned tired all the time. The bags under my eyes rival even the most extravagant mom-purse.

Now, this isn’t going to be all doom-and-gloom-and-woe-is-me.

This illness really showed me a few things I needed to understand. I have come to (halfway, at least) believe I am worth the effort, that I am worthy of that kindness and selflessness and generosity, and I have learned to prioritize my ‘spoons,’ so to speak (for anyone familiar with the spoon theory). I’ve found reserves of strength I didn’t know I possessed. I’ve learned to cherish every day, and find something in each and every one for which to be thankful. That happens when you realize that an illness is, more than likely, shortening your life span. You learn to value people more than things, and love and affection and friendship more than perfection. You learn to notice the good first, and to find the good in even bad situations. And to be grateful. Always. Strangely, having this kind of epilepsy helped me become a more positive person.

So, I don’t need sympathy or pity, or to be fixed by anyone other than me.

What I would like, though, is a little bit of understanding, when I just can’t push anymore. Or when I forget something, or can’t focus and screw up something simple. What I would like is a little less judgment on how I spend my time, and what I don’t do. A little less BS about being on ‘welfare’… you know, that system I payed into for many years, before I got sick?

What I’d like is to stop hearing various incarnations of ‘suck it up,’ when I’ve sucked it up as hard and as long as I could, and will do so again as soon as I’m able. I’d like to not hear anyone else talk about how much worse it could be (I already know), or start playing the my-body-is-mean-to-me-too-but-I-still-manage-to-do-yaddayaddayadda-so-why-can’t/won’t-you? schtick. What I’d like is to be able to push until I have to stop, without someone saying, the next day or week or whatever, “Well, how sick/tired/in pain/ can you really be, if you went to that party/went shopping/did that other thing, yesterday/last week/ a month ago?”

The seizures, and all of those direct after-effects, I can handle. They’re not pleasant, and it is a far cry from easy-peasy, but I’ve got most of that figured out, now.

What I can’t handle is this relentless questioning, judging, belittling, or minimizing of what I deal with, no matter how it’s done. What I can’t handle is constantly feeling like I have to explain myself, or defend myself, or isolate myself to keep my shit from inconveniencing or bothering other people.

It’s bullshit.

Unless you live my daily life, you don’t get it. You may be living with pain or illness or disorders or diseases of your own, and I don’t – CAN’T – know what that’s like either. You may run marathons or cook exquisite seven-course meals or build houses or kick the gym’s ass, in spite of whatever you’re suffering. I’m glad for you.

I can’t. This is how I deal with this shit, and it’s always to the absolute BEST of my ability. That may not be to the best of your ability, but you aren’t me.