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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An apology, and an (optional) explanation

I don’t generally go in for long explanations, when harm has been done. I did harm, this morning, with some heartfelt but thoughtlessly expressed sentiments and poorly chosen words, which conveyed nearly the opposite of what I intended. I screwed up in about a dozen separate ways, and people were offended and possibly hurt by that. For that, I am truly sorry. Period. Insofar as the apology goes, that’s all that really matters, and no one owes my explanation any attention, if they prefer not to hear it. I fucked up, I’m sorry, and I intend to do all that I can not to fuck up in that way, in the future.

Someone in my Twitter timeline retweeted the following tweets from Yves, regarding the revelation that Sandra Bland was homophobic:

yves

There was a tweet before these two, which apparently had a link to an article that I somehow missed. I replied with the following:

sandra bland mistake tweet

…and was soundly and deservedly reprimanded by three separate people.

Not having read, or even been aware of the article, my response was dismissive, and likely painful for some who read it. I wish I could rewind, and repair that. Stop and read the original tweets more carefully, from a more mindful, less emotional place, and either not respond at all, or respond with a better understanding and more thoughtfulness. Since I can’t, I’ll offer what explanation I can, here. Not as an excuse – I was wrong, and nobody is obligated to excuse that – but merely as insight for anyone who cares to have it. And this will be long. There’s a whole lot that went into the feelings that inspired those badly worded tweets, and I don’t know how to condense this, without losing the essence.

I’ve been really disturbed by this never-ending pattern of media and public response to state sanctioned murder of black men and women, and other people of color, in which the “they were no saint” rhetoric gets trotted out and paraded around every article, every television news feed, every sound bite, every comments section and social media discussion. It makes me physically ill to read, over and over again, the picking apart of every single personal choice, belief, and behavior of the victims of these crimes, as if smoking weed, or refusing to put out a cigarette, or speaking rightful challenge to over-reaching authority, or shoplifting, or being fucking rude, somehow justifies their murders. It’s the same damned thing that I, and other victims of sexual crimes, have to face when we come forward to either report those crimes or seek social support. It’s victim blaming, plain and simple. It doesn’t matter whether or not Sandra Bland put out her cigarette, when the cop told her to do so, any more than in matters what a rape victim was wearing, when some rapist made them his prey. It doesn’t matter whether or not Michael Brown had ever smoked weed, any more than it matters whether a woman had one too many drinks in a bar, if somebody assaults her. It doesn’t matter what the fucking VICTIMS did, before they were made victims, whether the person who victimized them was a rapist or a trigger-happy racist cop. The victims deserve our support. So, the whole not-a-saint thing hits me pretty hard.

Homophobia does, too. It has been a fact of life for me, since I realized I was something other than “normal,” something other than straight, when I was in my early teens. I’ve written, here, about what it was like for me, growing up bisexual in a bigoted, shitpot, southern town, and here, about how some of that bigotry was shoved down my throat, growing up. And here, about sexual abuse, rape, and victim silencing. About hate, racism, homophobia, erasure, shaming, indoctrination, and how all of those things have been a part of my history, a part of how I became who I am, now. If you don’t want to read them, I understand. None of them is an easy read. All of them come with possible triggers, especially for anyone who is marginalized, harmed, and/or oppressed by racism, homophobia, or rape culture. In a nutshell, I’ve faced homophobia for most of my life. I still face it, now. The memories of the ways it has been weaponized against me are still nearly as painful as its current presence. The fears of what that same homophobia, and the usually accompanying transphobia, may do to my teenage, transgender son, are ever-present and often overwhelming, even in the obvious context of my own undeniable white privilege.

Since my unavoidable return to that shitpot town, all of those things, and a sweeping culture of racism that pervades nearly every single facet of life, here, have made me all but a shut-in. I can’t go to the grocery store, without running into someone who bullied me in high school for being bisexual. I can’t stop to put gas in the car, without seeing a handful of bigoted, hateful stickers on cars, or an overblown pickup truck with a full sized confederate flag hanging from a jury-rigged flagpole in the back. Christmas dinner with my family ended with me, my partner, and my child walking out fifteen minutes into the meal, because of the blatant, unapologetic racism in my family’s conversation. My facebook, on June 27th, was FULL of right wing rhetoric about how conservatives and Christians were being oppressed by “that Muslim traitor in the White House.”

Living here, it is utterly inescapable, and for at least a few more years, I can’t leave.

So, I turned my facebook, where my friends are family and what few locals I didn’t have horrid associations with, from before, into a platform. Nearly every day, I comment on other posts, trying to simultaneously maintain composure, and fight against the all encompassing culture of hate-infested, cis-hetero, christian, white supremacy that permeates everything. I post educational things about the history nobody taught us in school, the one in which slavery was literally the ONLY real reason for the Civil War (and that, alone, is usually a brick wall), about how community policing, as we know it, has always been inherently anti-black, about how Jesus never condemned homosexuality, about how love between consenting adults is never either a sin or a crime, about how transpeople deserve the right to not be murdered by bigots, about how people of color deserve to live in a place where the police aren’t the enemy.

I have NO community, in real life. Aside from the two other people who live in my house, I have a sister and a former stepmother I barely see, and one old high school friend, with whom I find I have less and less in common. My father and extended family refuse to see their unconscious racism, transphobia, and homophobia, so I don’t feel safe in their presence. There is literally nothing to do, here, no place to go, that isn’t at least a 45 minute drive, which doesn’t involve associating with dangerously hateful bigots. I’m disabled, so travel isn’t something I get to indulge in, much, even just to the nearest city.

In the last two years, over and over and over again, I have either lost friendships, or chosen to dissociate myself from people who refused to see their victim blaming, predator enabling behaviors were a problem. So the vast majority of people I knew, people from my former home whom I considered friends, are no longer a part of my life. And that one former high school friend I mentioned? He’s a white, cis-, gay man. Recently, he was here, visiting, and dropped the phrase, “playing the race card,” into a conversation about politics. It was kind of the last straw, for me. I’m basically a hermit, now.

See, bigotry has been a fact of life, for me, ALL of my life. I am always the most upset and offended by that bigotry when it comes from someone who is also marginalized and/or oppressed by the current status quo. Hearing my gay friend express something so blatantly racist was enraging and devastating. The one person I believed I had, here, the one person I thought was more evolved, and beyond all that bigotry, had just revealed that he wasn’t. It felt, as it always does, when that happens, like a betrayal.

Oppressed people actively participating in or perpetuating the oppression of other people is the one thing I simply can’t ever wrap my brain around, can’t ever stop feeling astonished and hurt by, when I hear or read it. It rips into me like a dull knife, every single time.

What happened to Sandra Bland, even though we don’t know all of the truth, yet, was horrific and inexcusable. I’ve argued with idiots about this until I could barely speak. Idiots who trot out that ridiculous line about how, if she’d just obeyed the nice white policeman, she would have been fine. Idiots who spout the suspicious evidence of marijuana in her system as proof that she was to blame, somehow. Idiots who are just exhausting, and pretty much everywhere I go. I’ve argued until I wept, in frustration with them, and in utter despair of our culture as a whole. I haven’t been able to march. I can’t go to where the protests are, but I’ve been working towards educating other white people about the white supremacist reality of present day America, nearly every single day since last August.

So, when I saw that Sandra Bland was homophobic, it felt like a kick in the gut, on a day when (for a host of unrelated reasons I won’t even get into, here) my guts had already been pummeled. My initial emotion was that same sense of betrayal I felt when my friend revealed his racism. Then, a little bit of anger, and the return of that overwhelming sadness and despair for what our culture is, despite the fact that it’s the 21st century.

If the people I know, here, discovered this, they would undoubtedly use it as a sort of gotcha. They would use it as yet another reason why they think I’m wrong to believe that her death was not fucking okay, or in any way justifiable. They would do this, even while believing that I, and my son, are fundamentally less worthy, as human beings, because of our sexual orientation and gender identity.

And all those things were swirling in my head, as I realized that it didn’t matter whether or not she would have fought for me, or for my son. She did not deserve to die, alone and unjustly imprisoned. When I said that “homophobia isn’t a lethal offense,” I did not mean that directed homophobia doesn’t kill, because it absolutely does. I know why that seemed dismissive, and it is entirely the fault of my own hastily worded reaction. I only meant that her being homophobic was not reason enough to justify locking her up and taking her life. When I said what I did about her not having the opportunity to learn and grow, I said it from a place of someone who was raised to hate, raised to be racist and bigoted, and learned better. Someone who, through life experience and age and seeking knowledge and understanding, overcame some busted beliefs that were carefully cultivated in my young, formative mind. Someone who believes that we all have the capacity to overcome our broken and damaging conditioning, to become more empathetic and humane and caring towards one another, no matter our lot in life.

If someone had killed me, when I was a few years younger than Sandra Bland, I would never have been shown my internalized racism, either. I think that unjustly depriving someone of that chance is every bit as tragic as killing someone more socially enlightened, more empathetic to the ways in which people unlike themselves are oppressed.

So, yes. I will continue to demand answers and accountability from the people responsible for Sandra Bland’s death. Her homophobia didn’t make what they did to her less unjust, and my support for that doesn’t hinge on what her attitudes towards me may have been. I don’t say that for anyone other than myself, though. It is completely understandable and justifiable for other LGBTQ people to wish to withdraw their vocal support for that particular cause, in light of this information, and I don’t judge them in any way. For me, her death didn’t remove homophobia from the world, or even my little sphere of it. It just denied her the chance to gain experience that may have shown her a better way to be.

So, I will still  say her name. Sandra Bland may never have been my friend, if we’d met, but what was done to her demands justice, and she should not be forgotten.

Again, if you’ve made it this far, I am so very sorry that my language was dismissive, offensive, and/or harmful. I can’t promise never to screw up again, but I promise to try harder to be more conscious of my words, rather than spewing complex emotions into thoughtless 140-character blurbs. And now I’m off to find the article that inspired all of this, and learn how to do better.

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

Unlearning Apologies

I want to say I’m sorry
for saying I’m sorry
so goddamned much
for being a nuisance
with my insistence
that I’m too insistent
too needy
too much

I want to apologize
for apologizing
when I shouldn’t
when I’ve done nothing
wrong
when I’m simply feeling
like the burden
you assure me I’m not

I get frustrated
with myself
with my fears
with the crushing weight
of not knowing
how much need
is too much need

I get angry
with myself
because I know
better
I know
that you know
I get angry
because I am
saying I’m sorry
for existing
as I am
for being me

I see your face
puzzlement and proxy-pain
when you tell me
“No, baby
No sorries.”

And then I get angry
with them
all over again
for teaching me
that I am too much
that my need
is too much

Angry with me
for letting that stick
where other
better
knowledge has failed
for being afraid
to ask

Angry with a world
where being sick
or being young
or needing help
has always equaled
being too much

Then, you smile
and stroke my face
remind me that
it’s not a one-way street
remind me that
the things I give
balance with
the things I need

So I say again
I’m sorry
for saying I’m sorrry
so goddamned much


This kind of just happened. I wasn’t planning this. I was just sitting here, being grateful for what I have, feeling unworthy.

I had a seizure today. I hurt, and I’m tired. I’m not up to much, and going out, anywhere, is much. There are just days when the getting ready, the getting dressed and being presentable in public is too much. It’s daunting, like facing a mountain you never wanted to climb in the first place, and knowing you have to, anyway.

We had been, I think, planning to go get Chinese takeout at that place that lets you get the buffet to go. He’d been wanting it for a while.

And I just… can’t. And I knew he wouldn’t, as much as he’s been craving it, if I couldn’t. I asked him, if I gave him a list of the things I wanted off the buffet, would he be willing to do that? And I felt shitty, asking. I felt like an imposition, a burden, a drag. To ask him to go to so much extra effort, just because I’m all fucked up.

And off he goes, with a list and a smile, thanking me for coming up with a way for us to still have Chinese. And all this just kind of… erupted.

This thing has played out more than a time or two in my life, both before and after the illness, with romantic partners and parents and friends. The me being too much thing.

Most of the time, I’m okay. Most of the time, I hear him when he says that’s bullshit, that it was always bullshit. Most of the time, I believe him.

Standing in one of those mountain-facing days, though, and asking him to climb it for me, no matter how small it seems to him, sometimes I get scared. This is one of those days that life has taught me I have to be sorry for being me.

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.