Yes, they’re like assholes.

Originally posted elsewhere, December 20, 2013

In almost any controversial thread, someone will inevitably say one of the following:

  • You’re entitled to your opinion.
  • I’m entitled to my opinion.
  • [Insert third person pronouns here] is entitled to _____ opinion.
  • Opinions are like assholes. Everybody has one.

The person saying that, when not responding to an outright personal attack, is generally defaulting to avoid further discourse, because they – or the person with whom they are having the discussion – aren’t capable of debating the point with logic or fact.

Contrary to popular belief, opinions can be right or wrong. Not all opinions, certainly. Some things really are subjective. I am of the opinion that celery is gross. That is subjective.

Other things simply aren’t, and are no more justifiable by labeling them as opinions than one can justify Barney the dinosaur because apples. It’s nonsense.

If I stated that it was my opinion that dinosaurs didn’t ever exist, I would be misusing the word opinion, to represent either being misinformed, uneducated, or ignorant. There are objective facts that prove otherwise.

If I were to say that homosexuality is a sin, because Bible, it’s the same premise. Misinformation, lack of education, or ignorance. I’m not a Christian. I was raised in that faith, and have since rejected it, though, so I have more than a passing familiarity with the contents of the book upon which it is based. Before rejecting that faith, when I was still a Christian, I actually read the thing, cover to cover, four times.

I no longer believe in it, but I understand that some people do, and that’s their choice. For the purposes of this argument, let’s say the Bible is a factual historical document. If you believe that to be true, then you believe Jesus died for the sins of all mankind. That only by grace, and not by works, is one allowed to enter Heaven. Jesus’ death had another very important consequence. It rendered every law in the Old Testament null and void, with the stated exception of the Commandments.

Rom. 7:6: “But now we have been released from the Law, having died to that by which we were bound, so that we serve in newness of the Spirit and not in oldness of the letter.”

Every bigot who tries to use Christianity as an excuse for their hatred and judgment of homosexuality is, therefore, ignorant, misinformed, and uneducated.

Even accepting their premise – that the Bible is factual – their opinions are WRONG. Not just morally or ethically wrong, not just culturally wrong, but factually inaccurate. They are attempting to justify their fear and hatred and intolerance of an entire group of people based on inaccuracies.

They are, by definition, bigots.

Bigot: a person who is obstinately or intolerantly devoted to his or her own opinions and prejudices; especially : one who regards or treats the members of a group (as a racial or ethnic group) with hatred and intolerance.

-Merriam Webster

Calling them bigots isn’t a matter of opinion, but of fact, demonstrated through their own behavior.

Sure. Everyone is entitled to their opinion. That isn’t, however, a justification for being a bigot. Opinions can be wrong. Everyone is also entitled to be wrong. Just as others are entitled to call them out on it, or to react to it by, say, suspending them from their employment on a television network that doesn’t want to be associated with bigotry.

Opinions are like assholes, and everyone does, indeed, have one. It’s still considered impolite to allow them to spew shit all over in public.

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

Anything. Everything.

Eyes shining
glittering
brimming over
un-shed tears
of mirth
Your shoulders shaking
breath catching
jaws and ribs
aching from the onslaught

I puff up
come over
all indignant
offended
self-righteously put out

but the truth

The truth is
this is where
the limits falter
wither
and die

Because it is entirely possible
that no limits exist
in the lengths to which
I will dance
play the fool
submit to
embarrassments beyond measure

Just to see
to catch your frivolity
your exuberance
on each inhalation
to tremble with your delight

to see the sparkle
in your eyes

and to know
it belongs also to me

What would I do?

Anything
Everything

Originally posted elsewhere, Dec 16, 2013

…this Thing that happens

Originally posted elsewhere, December 4, 2013

I write. A lot. And, yes, I can hear the collective “D’oh!” from the chorus, thanks.

I also read. Also a lot.

I follow this crumb or that electronic heart or a comment that shows up in my feed. Sometimes, I read a sentence or three and roll my eyes and click away. Because they’re when the writer meant there, or Holy wall of text, Batman! or “could of,” or “defiantly,” when “definitely” is the appropriate word. It’s my one elitism, and I won’t apologize for it. Words are important. Seeing them abused and misused gives me mental hives. It burns.

Sometimes I feel the passion, not of simple disagreement, but of violent negation of the words glowing on my screen.

Sometimes, I just shrug and think to myself, Meh.

Occasionally, though, I feel the words. They hit like a sucker punch or a single-tail, they caress like a lover, they enfold me in a blanket of need or love or nostalgia or empathy. Shivers chase one another around my spine like squirrels playing. My toes curl. My breath catches.

I read. I reread. My lips move, usually in silence, as I taste the words.

And I have another crush. Another brain-licking-frenzy inducing crush.

Crushes on strangers make me shy, so I usually just don’t say anything at all. Sometimes, after this word induced wetness has been inspired repeatedly by the same person, I will work up the nerve to send a request. Inane prattle in a message that hides the fact that I want to be slurping up your grey matter while you sleep, because one doesn’t wish to be too creepy, you know.

Sometimes, I am so blown away that I just can’t bear to send a request, a check-yes-or-no note to that smart girl or boy in the next row. So I just admire from a distance, and hope they will notice me.

If I’m lucky, they do. I get a like, or a comment, on something I’ve written, from someone whose brain I’m already licking through the interwebz connection, and I feel like the cute boy (or girl) just made eye contact, smiled at me.

Or they send a request of their own. They ask me to the dance.

Either way, it makes me ridiculously happy.

It’s pretty awesome when the stalkees invite me in for tea.

My Rainbow Garden

Originally posted elsewhere, November 29, 2013

Unless you have been very, very lucky, you have undoubtedly experienced events in your life that have made you cry. So unless you have been very, very lucky, you know that a good, long session of weeping can often make you feel better, even if your circumstances have not changed one bit.

~ Lemony Snicket

I’m a weeper. It’s just…something I do. I cry when I’m sad, or frustrated, or overwhelmed with rage. I cry when I feel ashamed or guilty or extremely self-conscious. I also cry when I’m enveloped in joy, overcome by gratitude or nostalgia or love or peace. I cry while watching tear-jerkers, yes, but I also cry at DIsney movies and Hell on Wheels and Buffy. FFS! I cry if I blush too hard, or laugh too long!

I cry. A lot. I almost always have (that ‘almost’ is significant, but I will get to that in a minute). I probably always will.

I’ve taken an awful lot of shit for this, over the last 30 years or so.

I remember a conversation I had with my paternal grandmother when I was very small, probably only four or five. She kept all the kids in the family during the summer, after school, whenever our parents needed a sitter, so there were always at least six or seven of us around. One of my cousins had probably done something mean, and my feelings were hurt, and I was crying. I remember sitting on her wonderfully squishy lap, my head on her shoulder, and feeling very betrayed by the words that were coming out of her mouth.

You’re gonna have to stop all that cryin’, baby girl. Nobody likes a crybaby. You cain’t go through life bein’ so soft-hearted. Now, go wipe your face and go play with the other youngens.

And I did. I ‘sucked it up.’ I stopped crying. It took a huge physical effort, on my part. And it hurt. It hurt like hell. It made this lump in my throat that was big and hard and painful. This pressure built up behind my eyes, and all through my head. It’s the first time that I remember actually having a headache, and it was awful.

My parents were quite fond of the whole, “Stop that crying right now, or I’m gonna give you somethin’ to cry about!” thing.

Once school started, I figured out that crying would actually entice certain kids to try to make me cry.

When I was older, and involved in romantic relationships with boys and men, the guys would inevitably say, “I wish you wouldn’t… I hate it when you… For fuck’s sake, can’t you just stop all that… Dammit, there you go again with the – crying.” I’ve been told, now, by at least three different people, that a woman crying is the absolute equivalent to “emotional blackmail.”

Over the years, I’ve learned to mostly hide the weepy me. To excuse myself, even from the company of my nearest and dearest, when I feel it coming on at a ‘socially unacceptable’ time, or for a ‘not-good-enough’ reason. Because almost inevitably, someone would then break out one of those arguments, and I would feel guilty for crying. As I mentioned above, I cry when I feel guilty.

Just last year, at the not-so-tender age of 33, I did a desperate search on Google, and found this gem.

At thirty-three. Why? Because I was in an abusive relationship, where my weep-worthy negative emotions were frequently, intentionally triggered, and then gaslighted away, invalidated, and ridiculed. Translation: he made me cry on purpose. A lot. Then tore me to shreds for crying.

I spent a lot of time in the bathroom with the water running, blowing my nose, lavishly, as suggested in that article, breathing very deeply (yet quietly), and freezing my hands under the spigot, so that I could hold them against my eyes, to make the puffiness and redness go away. I kept eye drops on my person at all times, in case I couldn’t make it to the bathroom, so the tears would seem to be just Visine.

Not crying, when I feel the tears building up, is a damaging thing.

The “emotional blackmail” thing is hard to hear. Hard to process. It makes me all stabby.

I get that the more well-intentioned of the guys who feel this way about a woman crying are just trying to say that it makes them feel uncomfortable. That they instantly feel responsible, and, in most cases, want to “fix” it, whatever ‘it’ may be.

But what the people using that logic don’t understand, regardless of their intentions, is that IT ISN’T ABOUT THEM. Even if the tears flow as a seeming result of a heated conversation we’re having, or something they said, or something they did, the tears HAVE NOTHING TO DO WITH THEM. Nothing.

They’re a release of emotion, my emotion. My emotions aren’t anyone else’s responsibility. And how I handle them isn’t, either. Nor is it anybody else’s business what I need to do to process, to cope. I’ve been down the suck-it-up route. I’ve been down the hide-in-the-bathroom route. I didn’t like the end of those roads. The headaches, the shame, the pressure behind my eyes, the not-being-able-to-swallow-past-this-giant-boulder-of-a-lump-in-my-throat. The eventual feelings of numbness and detachment and apathy that are far worse than whatever emotion(s) originally made me get all teary-eyed.

There’s a Native American proverb (at least, I think that’s the origin. The interwebz could be wrong.) that states, The soul would have no rainbow if the eyes had no tears.

My soul is full of rainbows. Anyone close to me knows this. I’ve been watering my rainbow garden all my life.

I don’t intend to stop. They’re my tears. I’m entitled to them. Nobody gets to tell me otherwise.

Because they’re not about you. My tears, my feelings, my need for cleansing. Mine. You can’t take them, and you don’t get to judge them.


There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.

~ Washington Irving

Maturation

Originally posted elsewhere, November 19, 2013

As we grow and evolve and change, so do our ideas and ideals and values.

The things that were once important to us may become less so, or cease to be a factor, altogether.

The mistakes we’ve made, in deed and judgment, become lessons from which we learn.

The people who once were closest to us may be growing at a different pace, or in a different direction, or not at all, so it is often a side effect of that growth that they get left behind.

The people we once regarded with animosity or disdain may become friends, as we learn more about ourselves, our lives, our values, our priorities, and one another.

We do not have to be forever defined by the worst qualities we possess, unless we choose to be.

Those changes, and the apparent disparities they produce, are not equivalent to hypocrisy. They are simply evolution.

I am not, today, the person I was, yesterday. Tomorrow, I will not be the person I am, today. Those changes are incremental, usually, but they are there.

All else is stagnation, and stagnant things stink.

Inappropriate

I am inappropriate

my legs only cross when it’s sexy
and I sit with my knees too far apart in skirts

Your mother called me a hussy
we laughed because it was funny
but also because it was true

She said I am brazen
and I am

I will purr in your ear in public places
bend over in that way that makes you hard
even when there are people around
even if they might notice

I am inappropriate

I sing aloud along with the grocery store Muzak
piped-in pop with vapid lyrics
and bubblegum beats

I tell strangers’ bratty children
that I work for Santa
moonlighting as an elf supervisor
or a flight instructor for reindeer
even if it’s June

I dance when I shouldn’t be vibrant
and sing when silence is assumed
conservatism will be for my elders
even when I am old

I wear silly masks and make dinosaur roars
in the middle of shopping trips

whisper to you
how much I loved the way you fisted me
when we are alone
amidst company
for only seconds
and give you come-hither stares
across crowded rooms

I am inappropriate
childish
licentious
wanton
loose
free

And I will not apologize
for making you wish

you could be inappropriate like me

Originally posted elsewhere, September 2013

A coping mechanism for panic attacks

(originally posted elsewhere, September 14, 2013)

Back in early 2009, I went through a very difficult thing. It triggered all sorts of mental health nastiness, which in turn triggered some horrible panic attacks. Having dealt with recurring bouts of depression and anxiety for most of my life, I am pretty quick to recognize when I need help in that arena, and to seek it out. At the time, I didn’t have a therapist with whom I had any sort of therapeutic relationship, and I had Medicaid, while I was awaiting my disability. So, finding a new counselor was a lot of frustrating red tape, and lots of cold-calling random offices.

Then, my doctor gave me a list. He even talked me through it, while using a star rating system for those names with which he was familiar. Susan was the third one I called.

By then, it was late July, over two months after the trauma that started the whole process, and I was becoming fairly discouraged. I left my standard voicemail, and moved on to the next number on the list.

She called me back, within an hour. She explained that she was about to leave town for a month, as she does every summer, but would be happy to make an appointment for me, for the week after she arrived home. Then, she proceeded to spend two full hours on the phone with me, talking me through some really sensitive stuff with compassion and grace and empathy, even though we’d never met.

This woman is one of my personal heroes. She has helped me to do so much of the growing and owning-of-the-shit that needed to happen, the last few years, in order for me to be healthy.

Anyway, I told you all of that to tell you this bit. She later taught me a wonderfully simplistic coping mechanism for the panic attacks. I’ve since shared it with tons of people, and I don’t think there’s a single one for whom it hasn’t worked. I don’t know why it has never occurred to me to share it here, before, but I know that many of you deal with panic attacks, too, so I thought it might be a good idea.

Panic hijacks your focus. It is your body reacting, physically, to a strongemotional reaction, and it snowballs. It feeds itself. Then, you feed it. You feel the panic, so not only are you now panicking over the original issue, you are now panicking because of the panic.

The best way to break that cycle is to recapture your focus, and redirect it to something entirely mundane and devoid of emotion.

So, you count. Out loud, at first, until the habit becomes so ingrained that you no longer need the speech as a part of the focus (this may never happen. The speech may always be necessary to you, and that’s okay, too.).

It’s going to feel extremely silly, the first time or three that you try it. Practicing this skill, outside of the actual panic, though, is essential. You practice it until it becomes an automatic, habitual reaction to feeling the beginning stages of a panic attack.

Start with five. Five things you see. Five things you hear. Five things you (physically, NOT emotionally) feel. Then four of each, then three, and so on.

It’s okay to repeat. Don’t pressure yourself to come up with original items. That kind of defeats the purpose.

For instance, if I were having a panic attack right this minute, my counting would go something like this:

I see a soda can. I see my computer. I see my t-shirt. I see the carpet. I see my computer.

I hear the air conditioner. I hear distant traffic. I hear the dog breathing. I hear traffic. I hear my fingers clicking on the keyboard.

I feel carpet under my feet. I feel my head itching. I feel congestion in my chest. I feel the fabric of my pants against my skin. I feel my leg cramping.

I see my computer. I see the dog sleeping. I see a soda can. I see Kleenex.

I hear the traffic. I hear the dog breathing. I hear the air conditioner. I hear the air conditioner.

I feel congestion in my chest. I feel the carpet under my feet. I feel my leg cramping. I feel congestion in my chest.
…and so on, down to one of each, though it rarely takes that long.

The entire time, you focus on only your breathing, and the counting. Inhale before each observation, and exhale after. Do it as slowly and consciously as you can, in the moment. (inhale – “I see my computer.” – exhale)

Once the panic subsides, you may be tempted to return to the issue that caused the panic to surface in the first place. Unless that is absolutely necessary, table it for a while. Find something else to focus on. Bake some cookies (added bonus – comfort food!), or make some homemade soup. Paint something, even if it isn’t a very artistic thing. Paint a flower pot, or an old chair. Build something. Create something. Play a video game that eats up all of your focus, for a bit. Go for a walk. Call a friend to make plans for an upcoming event. Come back to the issue later, when you are calmer, and more able to focus on solutions, if there are any, or analysis, if it will help you.

Anyway. There it is, and I hope it helps some of you. If you haven’t tried it, please don’t discount it because it makes you feel silly. I felt utterly ridiculous, practicing this in Susan’s office, the first time around, but it has been an invaluable resource, since. I’ve yet to have a single panic attack, since learning this, that I couldn’t quash entirely on my own.

This is not, by any means, the only, or even best method. It is just one that worked for me, and a few other folks I know. The basic premise, though, is regaining control of your focus. If this tool doesn’t help you to do that, try finding another one that does.

Best wishes!

But, it’s just the way I am!

(originally posted elsewhere, February 4, 2013)

You never hear anyone say things like,

I’m a delusional, violent douchenozzle. It’s just the way I am.

I’m abusive and mean. It’s just the way I am.

I’m jealous, controlling, spiteful and passive-aggressive. It’s just the way I am.

No one ever says those things, yet there are code-words and phrases for a lot of behaviors that are similar to those, and you see it all the time.

How many profiles have you seen with the following quote (oft attributed to Marilyn Monroe)?

“I’m selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.”

How many times do you see someone posting something along the lines of, “I’m just that way, and nothing anyone does (including me) will ever change that?”

Selfishness, insecurity, argumentativeness, condescension, arrogance, tactlessness, negativity, jealousy, possessiveness, passive-aggressive behaviors, hyper-critical or overly judgmental attitudes, towards ourselves and/or others, and a plethora of other undesirable traits and/or behaviors are often expected to be given blanket acceptance, under this premise of it’s-just-the-way-I-am.

Frankly, it’s bullshit.

Every single one of those things can be addressed, improved, or even, ultimately changed. Every single one of those things is the responsibility of the person exhibiting the attitudes or behaviors to handle. It’s not on our friends, or our partners, to adjust their lives to accommodate such flaws. It’s on us, individually, to work on growing, improving, evolving into better people. That’s also not something we should do for those other people. It’s something each of us should do, because we realize that each and every one of those things is having a negative impact on our own lives, our own happiness. The fact that changing them makes us better friends and partners is simply incidental to making us better human beings, with the potential for living healthier, more fulfilling lives.

I despise that if-you-can’t-handle-me-at-my-worst mentality, and the quote that goes with it. It’s a cop-out. Displaying bad behavior as a test for how compatible you’ll be with someone is a totally asshat move. It’s like saying, “Hey, I really like you, and I think we could be good together, as friends/partners/whatever, so I’m going to be a total jerk to you, and see if you can handle it. How does that strike you?”

How about we start owning our shit, hmmm? How about, instead of that quote, we start thinking something like this:

I’m human. While I will make mistakes, and falter from time to time, I’m going to give you my best, as much as I can. I’m going to try to improve the things that could use improvement, and be the best me I can, for ME. While I don’t promise perfection, I do promise effort. I promise that, if I care enough about you for you to be an important part of my life, I will give you something worthy of that. I will hold myself to that standard. I’d like for you to give me the same consideration.

How about, instead of trying to match up with people based on how they handle us at our worst, based, really, on our lowest common denominator, we try to match up based on giving our best?

And why is that such an alien concept?

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.