Finally got my seizure med situation straightened out. Amazing what a hassle being an epileptic can be. Inanely complicated. What an irritating disability this has turned out to be. Next time I pick something more heroic.
A long time ago epilepsy knocked me clean out of college. Seizures, cluster headaches and especially amnesia don’t mix well with a university education. Still, I managed to live an almost normal life for an epileptic for a couple decades. That is actually quite an achievement. We usually just curl up and hide. Not me, I just took my meds and pretended it wasn’t there. Lost huge amounts of long term memory initially but you learn to live with that easily enough. The pretending it wasn’t there method caught up with me a couple times, though. Had to give up writing for a spell because it kept setting petit mal seizures off. A week in the hospital (see “Seizure Alert Babes” for that tale) and better meds took care of that, and after a long while I could write again, as long as I didn’t push it. And after a few years I was able to push it. Then I had a horrendous year a decade ago when seizure activity–set off by writing, actually–got out of hand and blasted my memory apart. Lost my facial memory for a while. That was interesting. (I recall not recognizing my own brother, not to mention people I’d worked with every day for years.) Other things too. In fact, all sorts of crazy complications and deletions. Some were momentary, some for maybe a week, some a few months, some apparently forever. But I toughed my way through all that too. I should have gone on disability then but the idea appalled me. Guess I was just a macho guy with a powerful work ethic. Or maybe I suspected, deep down, that if I ever stopped working I’d become another helpless epileptic, dependent on the kindness of strangers. The seizures leveled out eventually, and some of the memory returned (though faces are are still a problem–it’s amazing how your faces can all blur together.) Writing is rarely a problem now. You learn to work with your epilepsy. Sometimes even exploit it. When the world flattens and everything turns Van Gogh, it alters your perception and the words come differently. Or when hypergraphia sets in and you realize you’re writing something good, you hold off on the next dose of meds for a bit. Let the words gush. An old epileptic writer’s trick, that one.
Then a couple years ago I realized I could no longer work a day office job because I was losing too many faculties and too much short term memory. The strain competing with normal people in the work place was beginning to tell. I wasn’t getting things done and couldn’t figure out why. Software programs I was expert at could sometimes become very difficult. And I was forgetting things. Assets–I’d been one of the very best at my gig, and in demand–were becoming embarrassing liabilities. The strain of trying to compensate for or hide the lapses was beginning to tell, though it took me forever to realize it. An old friend told me, over lunch, that I looked like I was falling apart. You look like hell, she said, worry in her voice. She never did pull her punches. I said I was fine, still pretending. She was right, of course. But she had known me a long time and saw the strain before I did. The dreaded hard wiring had arrived–older epileptics begin to lose executive functions and memory. You know it’s going to happen eventually. It’s why you never seem to run into an epileptic working for a living at my age.
But I loved working day jobs. Did so my entire life. I hated stopping. That’s when it finally dawned on me I’m disabled. I’m one of those now. You have no idea how that crumples up a big guy. Everything I had, all of it, I had earned. Nobody had given the wife and me a goddam thing. I took quiet but intense pride in that. I was an epileptic earning my keep. I could be just as good as the normal people all around me. (An epileptic’s world is divided–unfairly, I know–into epileptics and normal people. No matter how weird you all may feel, you are normal because you don’t seize.) Somehow that was far more important than writing chops. And suddenly it was gone. Well, the realization was sudden. To any perceptive person I had crossed that Rubicon years before. And as I sat in the pharmacy yesterday, helplessly waiting for the decision on my medication as the nicest pharmacists and pharmacist assistants and neurologists and neurology nurses went way out of their way to match my birth defective frontal lobe’s requirements with the infinitely arcane rules, I felt utterly pathetic.
You see, I had signed up for Obamacare. I wanted to pay my own way. I had the means. I had already worked out the budget. But foolishly, if honestly, I had checked off the disabled box on the form. That (and my writer’s income level) apparently stuck me automatically in the queue for Medi-Cal. I had never dreamed I’d be on Medi-Cal. I had recently helped a pathetically indigent friend get on Medi-Cal. And now here I am. You have no idea what a shock that was, applying for health coverage under the Affordable Care Act and finding myself instead stuck in the welfare system. There was no explanation, just a rejection letter that I did not qualify for Obamacare (what? why not?) but that I might qualify for Medi-Cal (even though we are well above the maximum income level). That was months ago. Meanwhile I’m paying $120 a week for my pills. None of this sank in, though, I mean really sank in, till I was sitting there at the pharmacy waiting for word on my medications. There was nothing I could do to help the situation any. As I sat there, helpless, the realization about what all this meant came over me. I sank into the chair. So this is what it feels like to be on relief. This is what it feels like to be disabled. This is what it feels like when epilepsy rules your life. I sighed and stared at the floor. So this is what it feels like when epilepsy wins. I had fought it so long and finally I had lost. It was inevitable that I’d lose eventually. We all lose. If we don’t die of SUDEP, our brains just begin wearing out, like a beat up old car with a messed up electrical system. But I’d fought like hell anyway. Must have been the Irish in me. But here I was at last, fifty eight years old, defeated and broken. Everyone was so sweet about it. I kept flashing back to that week in the epilepsy ward decades ago when they came in to help me pee. Do you need to pee Mr. Wahl? A tiny Filipina nurse stood outside the door, listening. Are you OK Mr. Wahl? That was quite a moment–standing there with my manhood in my hand and being talked to like a four year old. I had thought that was as low as epilepsy had brought me. But somehow sitting here waiting to see if I could get seizure meds or not surpassed it. At least I could piss by myself. Now I can’t even order medicine without an army of sweet assistants. Are you OK one asked. She was so pretty. I said I was.
But let’s not make such a big deal about it. There’s a point where complaining slides into self-pity and I am dangerously close to that edge. This is all just a matter of more adjustment. And I’ve been adjusting for a couple years now already. Adjusting and dealing with all the bureaucratic nonsense, not to mention shelling out way too much money on solid gold seizure meds. Man that stuff is expensive. Wiped us out. Well, no more. All the nice people made sure that will not happen again, ever. I’m thankful beyond belief for that. I was living a junkie’s existence.
It’s certainly never been dull, though. We see the world in ways none of the rest of you ever will except on acid. That’s a cool thing. And I’d not be a writer without that hole in the brain right near the Broca’s area. That’s where language comes from, and mine is all fired up because the neurons are all messed up there. Something zaps and out comes words. Creativity is nothing but fired up neurons. And epileptics are just loaded with fired up neurons. Hence so many of us write. And we do, too. I was at a symposium for epileptics (yes, we have those) and the sponsors had left legal pads on the tables where we all sat. You should have seen my brethren in that room…at least a dozen or so of them were frantically filling page after page of those legal pads with dense prose. Who knows what the hell they were writing. Notes perhaps. Observations. Gibberish. Just because the neurons in your Broca’s area are all messed up doesn’t mean you write well. It just means you write. Like this, actually.
Anyway, I now have a cabinet full of meds. I was living on the edge of epileptic catastrophe for two years. Now that I’m properly medicated against seizures–big ones, little ones, constant ones–it’s time to get a career going again, make more money and get the hell off of Medi-Cal if they let me (just how much does a disabled person have to make before they let him buy his own insurance like everybody else? Or am I trapped here forever?) Though all I can do is write, actually, and everybody writes now. There are so many writers. There must be a thousand times as many writers now as a decade ago. And a tenth as many readers. It is such a sad time to be a writer. Talk about timing.
But I write anyway, sometimes for money, or just for the hell of it, or because I don’t have a choice. It just happens. Like epilepsy itself, I guess. You never know when it will completely mess with your life again. I try not to think about that, though, or wondering what life would be like without it. Sometimes I do watch normal people walk by and think that there, but for the grace of a couple mutant hox genes, go I. But I don’t dwell on it. That shit will eat you alive if you let it. Don’t worry, some idiot said, be happy.
Brick's Brain 