Epilepsy. It's Like This: Bzzzzt!

[first published in "The Flatland Oracles", my previous blog on 09.10.2005]

Epilepsy.  People always want to know---even if they are too polite to ask me---if it feels as weird as it looks.

“What’s it like to have a seizure?” a young man currently under my tutelage asked me. “Is it true you can tell when one’s coming on? Does it hurt?” He had the right to ask as he’d just rescued me from being hauled off in an (expensive: $500) ambulance following one such episode, and he was worried.

[1]  'Ignore it and it will go away.' No, actually, it won't. I had my first seizure that I know of when I was a year old. I had some sort of viral illness. It might have been meningitis, but was never diagnosed as such. After that, I didn’t have any problems until I was in second grade; I had a seizure one day in school. I was doing a writing exercise and suddenly I couldn’t write anymore. I was terrified and started to cry. I didn’t fall down or anything; I just couldn’t write. My teacher was surprised because there was nothing she could see that would explain it. My parents were annoyed, as they thought I'd just had a bout of hysterics. My father was more annoyed when, following the seizure, my handwriting deteriorated completely and I went from making 'A's' to making 'C's.' It was as if I really had forgotten how to form the letters; eventually---several years later---I re-taught myself. Nowadays, of course, handwriting wouldn't matter so much; but it mattered then.         

My parents didn’t do anything about the problem till I was in my teens because most of the symptoms were pretty ambiguous and they didn't want me to have a permanent disability.   To this day, my mother refuses to believe I have a seizure disorder. Her diagnosis---which is not shared by any medical professional----is ‘emotional problems.’ She feels that my seizures happen because I ‘let my emotions run away with me.’ That explanation certainly made sense when I was a neurotic teen-ager who suffered from serious pre-menstrual syndrome . Now that I’m in my post-hysterectomy forties and not particularly prone to mood swings except in direct consequence of a seizure, it doesn’t fit the facts as well. But oddly enough, it’s easier for her to deal with the idea that I might be really neurotic than that I might be disabled. I remember my dad yelling at me that if people found out I had ‘problems’ I would have to live with the ‘stigma’ for the rest of my life.   

And there is a stigma.  He wasn't wrong about that. It’s not as bad as it used to be, and people don’t dare discriminate against people for disabilities, but it hasn’t disappeared; it’s just gone underground. When I was in graduate school one of my professors advised me to give up my degree because I was clearly not going to be able to ‘cut it.’ An administrator gave me the same advice. Other students were quite frank about finding my disorder ‘bizarre’ and ‘off-putting.’ When I was working at my first job after I finished that degree, one of the bosses took me aside to say that while he personally respected me and considered my work exceptionally etc., there were other people in the company who found the fact that I had epilepsy ‘weird’. He wanted to know if I thought there was any chance I’d ever have a seizure in the workplace. I didn’t know, so I left soon after.

So what’s it like? It’s a very interesting disability in its way, in that it can take many forms and manifest itself in many different fashions
.

The onset for me feels exactly what like getting hit in the face with a high wind and blown temporarily out of the frame. More literally, it’s like---or perhaps just is---- a cranial short circuit. Bzzzzzzt! A spark jumps in the wrong direction and the whole brain goes on the fritz. But then after that,  it’s like being anesthetized---you don’t know it’s happening once it stops gearing up to happen and is upon you. It’s the period of time before it starts, when you know it’s going to happen and there’s nothing you can do, that is really the worst part of it. In between it happening and being over, I’m nothing. It’s not like being asleep; it’s like having your consciousness temporarily (and for me, very briefly) erased. The Greek word means or implies ‘being taken hold of’ or seized. That’s right on target too.

And you do get used to it. It’s painless.  You could get badly hurt falling down, but so far I never have. I’ve fallen down concrete stairs without getting hurt because I go so completely  limp. I don’t know it’s happening, so if I feel anything at any level, I don't  remember it afterward. I usually have a headache once I regain control over my faculties and I fall asleep whether I want to or not, but I’ve never been really injured as a result.  A bruise or two, a cramp in my jaw (from grinding my teeth?); a bitten tongue; that's it.

[3]  The epileptic 'aura'---those wacky precursors.

Like most people with epilepsy, I generally know beforehand when a seizure is in the mail, as it were. I sometimes know hours beforehand. Like many people with brain disorders, I sometimes smell things that aren’t there (most often, and inexplicably, the Estee Lauder “Youth Dew” perfume that my mother wore back in the 1980’s; occasionally, a sulphurous odor that smells the way a hard-boiled egg tastes if it’s been boiled too long; or the scent of  fermenting peaches).

There may also be a subtle intensification in the colors of things, though that happened more often when I was younger than it does now. I'm sorry in a way for that because the pre-seizure euphoria made up somewhat for the aftermath.  I used to feel---for hours beforehand---either euphoric or extremely anxious; I couldn’t sit still or concentrate. I still get a certain buzzing or ringing in my ears.

The biggest change is that I don’t get so much advance warning nowadays and sometimes the precursors turn out to be false alarms---like a sneeze that you feel coming on but that doesn’t happen. There’s even the same sense of anticlimax.

I used to have déjà vu, but of course you don’t have to be epileptic to have that. There are bouts of disassociation as well; you suddenly become conscious of yourself being conscious and it doesn't make sense and you can't get connected back to the part that says 'I'. 

[4] Teenaged angst v. epilepsy: how to tell the difference.

When I was a kid I thought I was going crazy. I’d read books like Lisa, Bright and Dark, The Bird’s Nest, Sybil, and I Never Promised You a Rose Garden, and I thought I was on the verge of schizophrenia or multiple personal disorder. Something dark and debilitating. I don’t know what my parents thought but they were frightened. Despite my mother’s diagnosis of ‘emotional problems,’ they took me when I was 15 to Duke University on the recommendation of a family doctor/family friend, where I was locked up with a number of very mentally disturbed people for a month or so for a psychiatric evaluation. I didn’t mind that much; in a way, it was interesting, and---according to a diary that I kept and that I found a few years ago---I preferred being there to being in school.

I don’t think it occurred to anyone that my teen-aged ‘fainting spells’ and emotional instability might have a neurological basis. The doctors at Duke diagnosed me with (I think) ‘anxiety and depression’ and gave me some pills to take because pills are what psychiatrists use. I stopped taking the pills within a few weeks of getting home---since I was still having the symptoms, there didn’t seem to be any point. My parents took me to see a child psychiatrist but---needless to say---that didn’t do any good either. Nobody thought of ‘seizure disorder’ till I was in my twenties. They might not have done so then if I hadn’t mentioned to the ER doc that I kept wetting myself when I ‘fainted.’

And that is one part of having seizures that is seriously embarrassing. I don’t care what you say or how much you know it isn’t my fault, it’s embarrassing. I usually pee during a seizure. Since mine seem to come in phases and subside again, I go through periods of time when I have to take embarrassing precautions. But that’s not the worst thing.

The worst thing is that afterward, people always try to talk to me and even though it’s like having someone try to talk to you when you’ve been suddenly and barely awakened during a deep sleep, I always try to talk back.  Imagine being woken up from, say, an alcoholic stupor and trying to explain yourself.  After years of hearing people repeat back to me what I say in the post-seizure state, I'm not too surprised that strangers who don't know anything about epilepsy think I'm mad or on drugs. 

If you’re epileptic, and people see it happen to you, they can’t help thinking the whole thing is a little odd. Prior to a seizure---and afterward---I’m often confused and hazy. I can’t speak properly. I can’t really understand anything that people are saying to me. I know some people find it weird, frightening, and freaky. How could they not?

[5]  ....and then you might get locked up anyway.

Once, years ago, and in another place, I ended up being bunged up in a mental hospital until my hopping mad neurologist contacted the person in charge and insisted that they let me out. I was a bit upset myself, but here’s a tip; if you are ever involuntarily taken to a mental hospital, don’t get upset, don’t complain, don’t insist that they let you out, and above all don’t try to leave, because all of that just proves (from their standpoint) that you’re crazy. How then, you may ask, do you get them to let you out? I just have no idea. Fortunately, I had friends in high places.

Years ago, someone called the ambulance when I had a seizure in a store and bumped my head or something (at any rate, I didn’t get my act together very quickly). They assumed, I guess, I was on drugs or was mad. I say “I guess” because I don’t know what the correct procedure is for someone in that sort of state, but the way the doctor in the ER elected to bring me round was by slapping me repeatedly and shouting at me to wake up. I couldn’t. It isn’t something you can just decide you’re going to do.

My brother, a doctor himself---and formerly an ER doc---doubts that this could have happened and suggested that my memory might be playing tricks on me. In one sense I'm absolutely certain that it did, and can even remember exactly what the doctor looked like, both at the time and the next day when I stomped back to the hospital and pointed out to him that I might well have a cause of action against him for battery if I chose to pursue it (not that I would ever really have sued). Nevertheless, the moment he suggested that it might be a false memory, I started to wonder myself---did I imagine all of it? I am sure I knew at the time, but I don't know now, 15-20 years later. Which is another aspect of this problem that people who don't have it probably can't really grasp.

"Wear a medical i.d.," people advise me.  But I am afraid to do that.  I am at an age now where I could easily collapse due to some other cause. Some of the other causes could be lethal or permanently damaging if not immediately treated.  My husband Don died of a cerebral hemorrhage.  A cousin of mine collapsed due to a heart attack, was misdiagnosed, and ended up in a coma.  Another had a sudden stroke.  What if I fall down due to some other cause and the paramedics see my bracelet and just assume it is a seizure?

[5]  It is possible to live a productive life without driving.

If you have seizures, they definitely limit some of your options. I haven’t driven a car for years. There was a brief period when the problem seemed to have gone away on its own, and I could have driven if I’d wished, but even during the very long period when I was seizure-free, I didn’t dare drive. I could have, but I didn’t. I could not bring myself to chance it----the potential consequences were too dire. And during the last few months, it’s started back up again---perhaps, one doctor speculated, because I went off the estrogen I’d been taking after my hysterectomy; or maybe because I hit my head really hard when I was crawling around under the stairs, I stood up where there wasn’t head room. I don’t know.

Anyway, I’ve adjusted. If I want to get somewhere, I walk, call a taxi, try to get a bus (I say try because it takes one and a half to two hours for me to get from my home to my work by bus because they run so infrequently) or try to find someone who’ll drive me. My husband has to spend a certain amount of his time chauffeuring me around. I’m lucky he is willing. Bike-riding isn’t a good option for a middle-aged lady who favors dresses and high heeled sandals; if I have to transport myself, I walk. So I guess the upside is that it has had some very healthy consequences.

[6] The care and feeding of a seizure disorder.

As for the medical side of things, I had a long period of being seizure- and neurologist-free, but now I’m once again in thrall to my doctors. I hate it. I have to take medicine and I have to be able to pay for it. I don’t have the option not to and I therefore don't have the option (if I wanted to) to quit my job.

It can get expensive. I sometimes get picked up by ambulances against my wishes when I am still too out of commission to protest, incurring substantial costs that my insurance is far from sufficient to cover.  Last time, I think my ER bill was $1500 (thank God for insurance) and as I said, a short trip in an ambulance can cost $500.  My insurance doesn't seem to cover much of that.   

I’m on medication now, but I also read that ketogenic, i.e., low carb diets, are effective. My doctor didn’t tell me that, but an epileptic friend who has had some success with ketogenic diets did. I don’t know if I want to go that route; I’m afraid it might be unhealthy in other ways. My experience verifies this. Exercise---and getting enough sleep, which is the biggest challenge for me---also helps.

[7]  More or less like anyone else, especially Howard Stern.

Nobody can tell by looking at me that I have the problem. I look more or less like anyone else.  Sometimes I do  have to wear dark glasses indoors to cope with fluorescent lights, flickering reflections, or flicering computer or TV screens.  ("Who are you supposed to be, Howard Stern?" someone who didn't know about my problem once asked me).   

[8] Luckier than some.

So that’s what it’s like for me. I don’t know how it is for others. A few years ago, when I was doing something else, I once had a student who had such severe epilepsy that he couldn’t function at all. He couldn’t afford the medication and he had to drop out. And there was nothing we could do to accommodate him that would have served---he couldn't work or function normally. I wonder what happened to him or if he ever went back to finish. Another woman I know of through my volunteer work was so poor that she couldn’t afford doctors or medication; she drowned in her bathtub a couple of years ago, like Mark Twain's daughter Jean.

Both of them had it much worse than I do, so I am one of the fortunate ones. I only have the problem sometimes. The people I work with are educated; they would never hold it against me consciously. I have insurance (or I do as long as I can remain employed). I have a husband who understands that I have this disorder and who is willing to support and protect me.

[9]  If I only had a brain.
Wikipedia lists some famous and even celebrated epileptics, including (but not limited to) geniuses who have made a permanent mark---in their very different fashions---such as  Socrates, Julius Caesar, Alexander the Great, Handel, Dostoyevsky, Harriet Tubman, Kierkegaard, Victor Hugo, and Van Gogh. I wonder how they can be so sure of some of them, but I’ll take their word for it. They weren't exactly happy people---and look what happened to Socrates and Caesar---but you can't argue that they led productive lives.

Comments

[Paula Apodaca]

Wonderful writing, good post! I enjoyed the way you worked
out the piece because it had a nice flow, making it easy to read...
At my age, this is important (54)!
Stop by and take a read of my own blog sometime...
Cordially,
Paula Apodaca