Coping

When I started this blog I really only had one post in mind - this one. Coping. How can you cope with epilepsy? It is not easy. Ultimately, it’s not about coping. It’s about overcoming. But you can’t get there unless you know how to cope.

First and foremost, don’t let assholes that think they know what you are going thru, pass judgment on who you are. Judging from my experiences, most people are simply ‘put-out’ that they must deal with your eccentricities. Even if you can work, most likely your boss is never satisfied with what you bring to the table.

Don’t let that bother you. Don’t let their judgments decide who you are. Those are the people in your life that don’t really know or care about your handicap.

And that’s another thing. Epilepsy is a handicap that isn’t readily noticeable. Even if you explain it, they often forget or disregard that knowledge entirely. (It’s never really real until they see you flopping around on the floor.) Plus, it’s hard for them to imagine what a petite seizure is. They don’t get it. They don’t understand the pain and suffering that accompanies a grand-mal. But you can bet that most bosses don’t cut you any slack.

No doubt I’m not telling you something you already know. What I can offer is an easy way to explain your condition that has a lasting impact, and hopefully will stick in their mind.

Try this: "31.5 percent of all people with my form of epilepsy commit suicide. You want to tell me again why your problems are more important than mine?"

Now, that statistic probably isn’t true. I heard that statistic from a drunk lawyer in Las Vegas. I’ve never been able to find any kind of real numbers on suicide, but that’s not the point. The point is this statistic is an easy and dramatic way to convey that living with epilepsy isn’t easy.

I have heard that suicide among my shaky brethren is rather high. I always took solace from that fact. Since you are alive and reading this I implore you to realize that you are already strong. You are strong for enduring. Only professional boxers after a 15 round split decision know how a grand-mal feels. And without many visible battle scars, know one knows your pain. Take it from me, you are already strong.

Endurance of suffering like this also allows you a certain arrogance. I often think about a Monty Python skit that I love. It’s called "Four Yorkshiremen."

Oh, yeah. Well, I had it tough.

Arrogance derived from suffering allows you the ability to disregard fools. Rarely will you come across anyone that has suffered as much as you. You and I have had it tough. You don’t have to sweat the small things. And if anyone demands to know why, give them the long version of living with epilepsy. My full story leaves people shell shocked. They are never the same again.

I’ll be back with more coping. Right now I have to do something I enjoy just for me. You should also.

Pill Boxes

I know it’s not fun, and you feel like you’re a hundred years old when you use one, but get the pill dispenser! It’s the only way to be sure you’ve taken your pills that day. It’s too easy to remember the day wrong, thinking you’ve taken your medication first thing in the morning. It happened to me all the time till I finally gave in and bought the damn thing. And yes, I hated it. But it works.

Confession time: Now, I know this is going to sound sexist but remember, I started getting grand-mals when I was 18.

Here’s my confession: I puts tits on my pill box. Tits you say? Yes, tits. I took pictures of naked women and put them over the lids and made it into my own little sexy advent calendar.

My point: do what you have to. If it takes tits to get make sure you take the right medication at the right time, put tits on it. I just hated the way that damn pill box made me feel.

A working strategy

I finally got fed up with how people regarded my apparent laziness. Generally your boss gets annoyed when you don’t show up for work every day. I tried to tell him when he hired me that things like that were going to happen. More often than not, it was reduced into a ‘where the hell have you been’ type of argument.

That’s why it so important to lay out all the issues with your boss before he/she hires you. You don’t want to be part of a club that would have you as a member. No, wait. That came out wrong. You don’t want to work for inflexible people.

Be sure to let your employer know what to expect in case of a seizure. It’s just easier on you. It saves money if you don’t really have to got to the ER. And screw the employees that must endure watching you flop around on the floor. You don’t need friends that are easily freaked out.

And, most importantly, don’t be a home-body. You don’t have to work from home. People will understand. Maybe not the first people you meet, but, eventually, you’ll find people that understand. If not, tell ‘em all to go fuck themselves.

For generations epileptics were regards as people touched by God. Epileptics are widely regarded to have a special insight into our very existence. And even if you don’t find a special insight, be aware that those who suffer greatly in this life are able to recognize real pain. We know what’s important. So, in that regard, we do have a special insight. You can see that insight in the great epileptics through history.

No despair. Despair is the mind killer.

Epilepsy Drugs

Don’t settle. If you are like me you don’t want to take any drugs. The side effects and the daily hassle to take the drugs are a struggle on its own. Don’t let that bother you and don’t just settle on a drug just because you don’t enjoy the hassle of bothering the doctor. Your doctor works for you; although I know there is nothing that saps your soul more than waiting around a doctors’ office. Bug the hell out of your doctor. If you are not happy with your doctor, find another one.

Your goal needs to be to find a drug that allows you to function on a daily basis. There are enough drug choices now that you shouldn’t settle on something that doesn’t do the job. - mainly getting rid of the grand mals.
For people like me the main struggle was against the grand mals. After 15 years of half-ass drugs I finally settled on Depakote - which did relieve me of grand mals but had the unfortunate side effect of slowing my thinking down to a crawl. Still, it was worth it to get rid of the grand mals.

FYI: My good life long friend and former Governor Ann Richards suffered from epilepsy.

I'm giving my Krusty Brand seal of approval to Depakote.

Be Careful What You Wish For

When I was thirteen I began having a crisis of faith. At least that’s what I called it at the time. In reality it was more of a crisis of existence. I was stuck on the questions - What am I? What is this? What is going on? Reality made no sense. To a lesser degree it still doesn’t.

Those questions kept swirling around in my mind for well over a year. I would find myself praying to God, over and over, asking those same questions, over and over.

Be careful what you wish for.

By the time I turned fifteen I had resigned myself to never knowing these answers, but I took solace that no one else knew. It was about this time that I started having petite seizures. At the time I didn’t know what they were. Petite seizures are like little jolts of electricity that broke my train of thoughts and left me wondering what just happened. (I’d lose about two seconds of memory.) It was difficult covering up my lapses. People would be talking to me, and my head might twitch, but there was no outward sign that anything about me had changed. So when my response to our conversation wasn’t quite right, they would often regard me as insulting or aloof. A missing two or three seconds of any conversation left me putting together puzzles without all the pieces.

At the time I didn’t understand what I was experiencing. Imagine getting directions from someone and losing a couple of seconds: Zap. "What? Oh, sorry. Head down East third to . . ." Zap. "Okay, lets start again, head down East third. . ." - It’s a bit unnerving to say the least. And anyone your talking to thinks you’re an asshole. Petite mal seizures would hit me nearly twenty times an hour - all day.

All the while this is going on, I continued to pester God, "What is going on?" "What am I" "What is this?" "How can this possibly be real?"

I didn’t have my first Grand Mal seizure until I was 18. Even then I didn’t understand what was going on. I woke up with a huge knot on my head where I had fallen. Only, I didn’t know that I had fallen. I didn’t know my own name. A full grand-mal is a truly jarring experience. Cascades of electricity shoot out of my brain, leaving me to fall, face first, wherever I am at the time. My muscles would tighten to their maximum tightness for the next four to ten minutes. It’s a hell of a workout. I would wake up feeling like I had run a marathon on my hands. Everything hurt. My toes hurt. And the soreness would go on for over a week.

Waking up from a grand mal is another test of endurance. A full blown seizure would leave me thinking - nothing. Not a thing. Like a computer overload, my brain was wiped. I had no memory of anything. Complete amnesia.

It’s a strange thing to have amnesia on a regular basis. There’s about three minutes when even the language center of my brain hasn’t kicked in. I can hear what people are saying to me, but nothing makes sense. It’s at these times I can’t even think in words. Just emotions and thoughts. Who am I? What am I? - I am fear. I am pain and suffering. I am panic.

The experience would leave me in total panic. The pain was from the bloody knot on my head from the fall. The suffering would come from my body after it’s marathon session of flexing. Panic would set in as people would be surrounding me, asking questions like, "are you alright?" "Who is our current president?" "Do you know what day of the week this is?"

I’m 46 years old now. Even on medication I had on average three grand mal seizures a year for over twenty years. Many, many, trips to the hospital. Not a lot of fun. And still, the worst part of epilepsy is the petite seizures. I still have those, although not as much as I use to.

But God answered my question. God came thru in the end. What are we? What is going on? Why are we here? What am I?

I followed the Buddhist path to enlightenment. Many years ago it occurred to me that what Buddhist monks were trying to accomplish through meditation, I had achieved through malady. Try this exercise yourself. Try not to think. Try to clear your mind of your own thoughts. It’s not an easy thing to do. After a grand mal seizure I had no thoughts. My brain was a clean slate. It’s the definition of amnesia.

I had trained myself to answer those dumb questions people asked after a seizure. Who is our President? What year is this? I had forced those answers into my brain, even without understanding what they meant. I would answer, "Clinton or Bush" without even understanding what a President was. I would tell them what year it was without knowing what a year was. Knowing this, I tried to force another first thought into my mind.

"Relax" "Breath" "Try not to think" "be one with the universe." "No pain." - - - Not an easy thing to do or think about when you wake up in extreme anguish. But, after a dozen or so grand mals, I achieve just that. I clearly remember the first time I touched oneness. I was in my father’s office when I woke up. I recognized the scene. Pain and suffering filled every inch of me. I tried to breath. I tried to relax. And then there I was. Everywhere.

Don’t let anyone try to sell you that oneness is like heaven. It’s not. My first experience was jarring and scarey. Oneness is like being hit by a train. It’s too much. Reality isn’t reality if you are not separate from it. Oneness loses your self. Which is still of consternation to me - it’s a hard thing to reconcile.

Subsequent visits to everything became manageable at least in a psychological sense. I slowly began to understand what I was experiencing and I achieved peace with it. I’ve told this story to friends and family - often falling on deaf ears. For those interested in the experience of oneness, I can only say, - - - don’t worry about it. There will be time enough for oneness when you are dead. Which leaves me shaking my head in dismay at the billions of sky pilots jabbering into heaven on this planet. I understand it. Those billions are me when I was 13. They are all asking, what am I?

If I took one thing away from the experience it’s that - - God doesn’t want us to spend our time praising her. God wants us to live. Also - God is everything and everyone.

Obviously I took away much more from my brief moments of oneness. I could spend days trying to relay the emotional impact of my religious experience but in the end, that’s what life is. Life is the journey to finding ourselves thru this reality. Trying to convey my journey is just one more story in your journey. Relish your path. Enjoy your existence while you have it. It won’t last forever.