It's just a ride. . .

Another day, living outside of oneness

I haven’t been much for blogging lately. For over a week I’ve been plagued by petite seizures, . . . again. For the most part I rarely have them any more. A couple of weeks every year they arrived like a shrimp fork poking my balls, leaving me disoriented, disturbed and petulant. Bah, humbug.

Grand-mal seizures

For those of you unaware, petite seizures are quite different from Grand-mals. Grand-mal seizures kick my ass, beat the snot out me, and leave me emotionally and physically drained. I fall head first, usually lacerating my scalp. (I’ve been lucky not to suffer from many concussions.) As I convulse, every muscle in my body flexes to its limit for nearly 5 minutes. When I awaken, the pain from the head wound is barely noticeable compared to torrential agony of my muscles as they scream from the forced work-out. I’ve bitten thru my tongue so many times the scars across my taste buds are only outdone by the cris-cross pattern of scars on my scalp. Even a short grand-mal seizure severely stresses my body. I am forced to drag myself home and sleep for 24 hours and then putter around the house for two days as my brain fully re-boots and my cognitive powers return. If that wasn’t enough, I receive a bill from the hospital as an souvenir of the experience. With that in mind, believe me when I write, petite seizures are much, much worse.

“Why me? What could God possibly gain my tormenting me?” - - - I hate it when people say things like this. Blaming a horrible experience on God is weak. My answer?: What? You’re too good to have the shit kicked out of you? Not hardly. Life isn’t suppose to be never ending bliss. What fun would that be? I like to imagine that we all knew the perils of suffering going in and we were ecstatic to get the chance.

2B R NOT 2B or, Death is easy, life is hard.

If we live forever, even terrible moments will be remembered as fleeting orgasms compared to the entirety of our existence. If we take the perspective that our time on earth as only a speck on the time-line of our future lives, then we can easily equate the sorrow and grief we feel from losing a loved one with that of a toddler when he’s left with a baby sitter. Two hours away from mommy is a serious percentage of life time for the kid.

Dying isn’t easy. Sometimes it’s terrifying.

Next year I plan on trying my hand at stand-up comedy. I know that dying on stage will kill me emotionally, but my desire to enjoy that rare experience easily outweighs the humiliation and suffering involved. Patton Oswald spoke to my fear when he said how uber-cool it would be to die in the Apocalypse. He’s right, that would be a great way to die. So I thought I should learn how dying feels before my last day.

Back to petite seizures. Zap. Now, where was I?

Petite seizures slap me around like a Bangkok whore who’s been holding out on her transvestite pimp, Dick Cheney. (I have no idea what that means.) Usually lasting less than a second, petite seizures zap my consciousness, forcing me to re-boot my thoughts, over and over and over again. As an extra side dish of bitch slap, I am rewarded by annoying the hell out of anyone who is talking to me. Try losing an entire second, four or five times during a conversation. With no way to let the person know I’m being tortured by electricity, I am continually being regarded as a jerk for not listening. Ahh, good times.

It’s not all bad. Frustration from this predicament has given birth to a weird and fun sense of humor. I find myself laughing at the stupidest things. Schadenfreude forces absurdity to any kind of self-congratulatory dignified conventions. I’ve already written an award acceptance speech: “I’m drunk. But I’m not too drunk to notice this is the biggest circle jerk I’ve ever been a part of.”

I have faith in the ride.

What is faith?

Faith is throwing off the desire to interpret reality. I am convinced that this desire is instinctual. We do it all the time without thinking about it. Distressing, uneasy thoughts like, ‘What am I?’, ‘What am I experiencing?’, ‘Who am I?’, ‘Why do I suffer?’ is easily capable of stressing the psyche beyond reason. Desire for these unanswerable questions rises exponentially with the amount of suffering involved in our lives. It’s not hard to understand why. Even without intense suffering, questions like these can quickly become an obsession.

Ultimately, thoughts like these are self defeating. For the most part, they are unanswerable. The desire for faith comes from our desire to enjoy life without these god-damn nagging questions. It’s a form of personal torment to bring these thoughts to the forefront, making it a relief to believe these sufferings comes as part of a grand reason. Life is soooo much easier when organized religion dresses up all these sufferings as “God’s will.” Job done. Let’s go home.

I have faith in the ride. Irrationality can be invited along for the ride, but why would you want to obscure the view?

I asked and I received.

“Who am I?” was my question to God. Now, I’m not so sure I should have asked. But, since I did, and since I got an answer, I thought I’d pass it along.

You are not static

Ask yourself - - - Who are you if a serious blow to your brain can quickly re-define your thinking? It’s not uncommon for brain injury to result in changes in character, demeanor, and personality. A nice guy turning into an asshole is common in the world of brain trauma. Aaggressive extroverts suddenly becoming recluse introverts happens all the time. You are not who you think you are because you are not static. We are today who we were yesterday is a false impression. Try thinking in terms of who you were at 18. Is that you now? Who will you be ten years from now? Is that you then or is that you now?

On many occasions I have experienced parts of my brain corrupted and non-functioning. For instance, after waking up after a grand-mal seizure the language part of my brain is unavailable. I have thoughts, but without the ability to give them context or description. It’s a strange world, but it has happened to me so often the experience has become almost enjoyable. Are we nothing more than thoughts without words? Not hardly. But it’s important to understand that language is as subjective as anything else we experience.

With parts of my brain corrupted, rational thought becomes impaired. Sometimes the brain can recognize this. I can attest that, for brief periods, yes means no, up means down, monkeys are typewriters. And then I stop myself. Recognition of these incongruities forces re-examination. Yes doesn’t mean no. Up is not down. Who am I? What am I?

For me, this is part of the re-booting process.

Who are you?

You are everything. When you die your ego is stripped away. To understand you must ask yourself who you are without your individuality or even language. As part of everything, you are no longer an individual. - - - - Which makes living outside of oneness so very, very, precious. Enjoy the ride.

How do I know this? Read

Also, the ride isn’t as fun if you know how it ends.
_________________



Sing Along to the Galaxy Song:

Just remember that you're standing on a planet that's evolving
And revolving at nine hundred miles an hour,
That's orbiting at nineteen miles a second, so it's reckoned,
A sun that is the source of all our power.
The sun and you and me and all the stars that we can see
Are moving at a million miles a day
In an outer spiral arm, at forty thousand miles an hour,
Of the galaxy we call the 'Milky Way'.
Our galaxy itself contains a hundred billion stars.
It's a hundred thousand light years side to side.
It bulges in the middle, sixteen thousand light years thick,
But out by us, it's just three thousand light years wide.
We're thirty thousand light years from galactic central point.
We go 'round every two hundred million years,
And our galaxy is only one of millions of billions
In this amazing and expanding universe.

The universe itself keeps on expanding and expanding
In all of the directions it can whizz
As fast as it can go, at the speed of light, you know,
Twelve million miles a minute, and that's the fastest speed there is.
So remember, when you're feeling very small and insecure,
How amazingly unlikely is your birth,
And pray that there's intelligent life somewhere up in space,
'Cause there's bugger all down here on Earth.
_______________

On another note: My aggravation with the right-wing nonsense spewed regarding the coming Apocalypse has been pushing my buttons for years. And if it’s not the Apocalypse it’s something else. These delusional wackos are irritating the rationality right out of my existence. As far as I’m concerned their theories about God is mental masturbation. Forever my hero, Jacob over at Contextual Criticism has been keeping me sane. I need guys like him. Jacob reports from his heart about his objection to the hypocrisy birthed from the myriad of organized religions. (So many I have a hard time keeping track.) Contextual Criticism is a pleasure. If you have the chance, give him a read at: http://mythandhope.blogspot.com/

Living with Depression

If you're living with epilepsy you're living with depression. The two go hand in hand. If only because seizures are so traumatic, both mentally and physically.

I recently found a web site I thought might help with the little things. . .

I'll try to write more on the subject - I count myself an experienced expert.

How to get Shit Done when you're depressed. Click here.

Suicide risks

Be aware: F.D.A. Finds Increase in Suicide Symptoms for Patients Using Seizure Medications

One of the drugs I liked - Depakote, along with Lamictal, Topamax, Keppra, Lyrica and Neurontin have been linked to increase suicide.

Neurontin, as best as I can remember, does absolutely nothing to help with seizures and I’m not too sure why they even prescribe it at all. A few years ago I read a piece about how some families were suing the makers of Neurontin for that very reason. It did nothing.

It’s important to self evaluate your mental state while taking these drugs. The Depakote helped relieve me of grand-mal’s but it does this by slowing down my mental functions. It slows down the brain - which lessens the chance of a missfire. The bad part is, you do think slower. I suppose most of these drugs do the same. Thinking slower may work against seizures, but it’s not easy on your psyche. You begin to question who you are.

Self evaluation is needed because if you get depressed, thinking slower only strengthens the sadness. (Especially if alcohol is involved.) It’s a nasty combination. Do yourself a favor and get on another drug if depression takes over.

I know, you don’t want to go to the doctor again and fool with that. Just do it. You don’t have to be living with depression. Slug thru it and keep going.

And remember, if you ever really feel like killing yourself - e-mail me your phone number at tomkorioth at yahoo dot com. You don’t have to keep feeling like that. I know, it sucks.

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.