This is mostly a republication of a diary I wrote about 4 years ago, and then rewrote about 2 years ago when Chief Justice John Roberts had a seizure.
I didn't really grasp the reality for 4 or 5 years.
I have epilepsy. Really, it's only technically epilepsy. Well, okay it's actually diagnosed epilepsy, but I say technical because others live with a much more life challenging form of epilepsy, and I don't want to put my problems in the same ballpark as theirs. Epilepsy itself has sort of gotten a new name. It's still referred to as epilepsy, but now it's also getting fit into a category called "seizure disorders." "Seizure Disorder" is just a way of avoiding saying a word that might seem like a sensitive issue to some. Some people just call it "The E word."
Look below for the reason behind the title.
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The reason that I have titled the diary, "It's still possible, any day it could happen" is because even if someone has their seizures "fully" controlled, they live with the constant threat that they could simply go down, boom. Out like a light, muscles tensed, teeth clenched, jaw muscles practically breaking the teeth, back arched, body rigid, brain incapable of relaxing the misfiring electrical impulses that have brought down a nearly 200 pound human. At some point, it will end.
I hadn't actually thought about this before, but when I read the foreword to a book about epilepsy, the author made this point. I guess it really struck me as a reality of my life, and it caused me to be certain to know the issue.
Imagine this
You are sitting in a restaurant, counting money. You have just spent the prior evening with your friends drinking and having a good time. The sequence of events goes from counting money to waking up on the sidewalk, and you don't notice that perhaps a half an hour has gone by. You slowly return from a foggy world that cannot be remembered, even though during part of the time you were able to see the world around you, hear the world, and even interact with others. But you were like some kind of zombie.
Imagine this
You are at work. You work in public place. Someone asks you where the bathroom is. You are not able to tell them where it is, because even though you have worked here 8 years, and you would otherwise know that the bathroom is one floor below, you are not able to tell them, because something in your brain is shorting out so that you simply cannot access your memory of time and location. Or you can imagine that you are at work, and that you need to use the bathroom, but you are unable to remember where it is, yet you are still able to hold a conversation and tell your friend that, "Yes, I am looking for the bathroom, but I'm unable to find it now, because I'm having a seizure, and for some reason the seizure is blocking my access to that part of my memory."
Imagine this
You are on an airplane, returning from a trip to Europe. You are cutting into a piece of airplane food ham. The next moment you can remember is you sitting in first class wishing that you could walk back and apologize to the people who were seated next to you.
What is epilepsy?
Epilepsy is a neurological condition that makes people susceptible to seizures. A seizure is a change in sensation, awareness, or behavior brought about by a brief electrical disturbance in the brain.
In other places I've read that an individual with epilepsy is someone who has had more than one seizure. Lots of people can have a single seizure as a result of a health episode, but it takes more than that to be part of the club. Some people may be sensitive to the word "epileptic." I can't speak for everyone, but I wouldn't be surprised to find out that most of the people who are sensitive to that word are people who don't have epilepsy. Personally, I use that word. It does me no harm.
How did I catch it?
Well, I dated this girl in highschool. It was an unfortunate circumstance, but apparently she had it, and I didn't use protection.
Okay, I didn't catch it. You just don't catch it. However, it could come about as a result of a brain infection.
Most often, the causes are undetermined. The Epilepsy Foundation says that in 7 out of 10 cases the initial cause of the seizures is never determined. However, the causes that are determined include head injuries or lack of oxygen during birth which may damage the delicate electrical system in the brain. Other causes include brain tumors, genetic conditions (such as tuberous sclerosis), lead poisoning, problems in development of the brain before birth, and infections like meningitis or encephalitis.
In my own situation, there was never a cause determined. It's probably because I'm too intelligent and handsome. Or, it could be my humility. Really, it's anyone's guess.
What kind of seizures are there?
Okay, so now you know that it is difficult to determine a root cause of the epilepsy itself. But how does each individual seizure come about? The seizure is not the affliction, it is a symptom of a problem. It's kind of like diahrrea. Diahrrea can happen for many reasons, it's just the outward sign. Seizures can come in many forms. They can be very benign, or very severe. I didn't know I was having seizures for a couple years.
There used to be two main categories- Grand Mal and Petit Mal. Neither of those categories exists today.
Without going very deep into the types, I'll mention the basics. There are Generalized seizures, and there are partial seizures.
Partial seizures do not include a loss of consciousness. They may be recognized by a strange odor, or some auditory disturbance. When having a partial seizure, the individual will likely remain aware, and be able to continue a conversation. There are two types of patials. The first is a Simple Partial Seizure(SPS) , that is what I have described above. The second type of partial is a Complex Partial Seizure (CPS). The individual may become slightly "automated." She may begin tugging at her clothes, or turning her head, or mumbling.
Some Generalized Seizures are what were once called Grand Mal seizures.
There are two types of these seizures. The first is anAbsence Seizure (formerly Petit Mal). It is difficult to determine the difference between an absence seizure and a complex partial. The absence seizures don't often last for more than 10 seconds, and the recovery time is reduced. Finally, we have the Big Kahuna of seizures- the Generalized Tonic Clonic. I know that sounds like a drink or some invasive alternative health solution, but it's the real name. It used to be called -Grand Mal-. That's when you get full body involvement. The individual falls and the body can become rigid, he loses consciousness, and a general hubbub ensues as everybody rushes to be the first to extract their wallets from their pockets. (That makes it sound like it's some kind of street performance.)
What Does it Feel Like?
At first, it was a little strange. I didn't know that I was having Simple Partial Seizures. A SPS can feel different for different people. Before I knew what was going on, I thought I was having some terribly intense Déjà vu. I don't think it's because I actually thought I was experiencing something again, but more likely that when I'm going to have a SPS, I can feel it coming and I know there's nothing I can do about it other than ride it out. Sometimes, I try to talk about it with someone while it's happening. I become a little chatty during the seizure. My friends know that it's no big deal, but I like them to know that it's happening so that they aren't thinking I'm high or just being a prick. Mostly, it's just a comfort. Even having a small seizure like this can be unnerving and make one feel lonesome at the moment.
The student in me takes time to study the feeling while it occurs and as it passes. I notice that while I have no interruption of motor skills, I lose complete sense of time and location. On two separate occasions I had partials when my friend and I were in my car and I was driving. We were in an area of Seattle that I knew very well, but as the seizure occurred, I couldn't tell anything about which direction I needed to go. The most familiar location in the world became a world of things I recognized, but which I could put not put together in any kind of understandable geography. A second and third time, I was unable to locate the restroom in my place of employment. I was walking along towards the bathroom when a seizure came on. I ran into a friend and he said something like, "Hey, what's going on?" I had to be up front and let him know that I was having difficulty locating the restroom.
Everyone with epilepsy has their own unique feelings associated with seizures. It seems to me that each simple partial seizure has its own severity. Some are over quickly and leave no lasting effect, but others last longer (how long, I don't really know) and leave a lasting fatigue that really drags one down for the next hour or so.
How does it feel to have a generalized seizure?
That's a damn good question. What was it like when my body has tensed up and I've fallen to the ground, or to the floor, or just lay in bed? I don't know. I don't notice anything about it. I'll be sitting there, eating, or counting money, or just, well, sitting there, and then Boom! The next thing I know I'm being belligerent to the person who is attempting to contact me. While I was blissfully kicking the chairs around, waxing the floor in the restaurant, causing a scene next to my wife in bed, or biting the crap out of my tongue, I was completely unconscious. I had no awareness of the event.
When the Tonic Clonic is over, it takes some time for me to be able to get to a point where I have a working memory again. This is the postictal period. A conversation with me following a seizure would look something like this:
Them: Are you okay? You were just...
Me: Of course I'm okay? What's your problem? Get your hands off me.
Them: But, you were just rolling around on the ground...
Me: Bullshit. Nothing happened to me. Why are you waking me up?
Them: We're not waking you up. You just had a seizure.
Me: Get the hell away from me. I didn't have a seizure. I'm just trying to get you to leave me alone.
Them: We have to take you to the hospital.
Me: I'm not going to the hospital, nothing happened to me.
And so it would continue until I could reach a point of consciousness where I have a working memory and am able to remember that, yes, I do have seizures.
When do They Happen?
That's a good question. This interviewer is keen. He really knows how to ask the insightful questions.
I don't know. For me, there is no particular trigger. A trigger is an event that brings a seizure on. For some people a fluorescent light is a trigger. For others a certain odor may be a trigger. A partial list of triggers might include, animation on computer screens, energy level of the screens, alcohol (the dehydration aspect), dehydration, heavy exercise, food allergies, strobe lights, and inadequate sleep.
Health Insurance
I was turned down for having a pre-existing condition a long time ago. Then I went uninsured for years. Finally, when I married my wife I was able to get coverage through her insurance. The costs associated with my level of seizure activity are relatively minor, but it will be nice to know that companies will not be able to turn me away if I'm in the "market."
I'd really like to hear from other Kos members who have epilepsy , or who have been touched in some way by epilepsy. Mostly, I want to demystify the problem. We are among you. Most of us go to work, though there is a 25% (probably even higher now) unemployment rate among those with epilepsy.
This is my third fourth diary on this subject. Each diary has had only tiny changes, although the second diary is more specifically about John Roberts when he had a seizure, and it's also about some of the mystical associations with epilepsy.
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