(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.
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.
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.