Hi there

[bramovitch]

Hello,

First of all, English is not my native language. So excuse me for any mistakes in this (and following..?) posts.

Second of all, I apologize to the moderators of this forum. Allthough this was ment to be a brief post, apparantly it turned out to be much more of that. I do apologize for the lenght of this post and would surely understand if this post has to be removed or relocated.

And last, I don't suspect anyone to react to this. I guess it's more of a therapeutical thing. A ventilation of some sort. But do feel welcome to let me know how you feel, what you think... And yes, they do have these forums in Belgium as well, but I feel more 'anonymous' on this one.

Do get set for a long text, there are a lot of things I need saying (or, well, writing).


Right, here we go.


My name is Bram. I'm 24. I live in Belgium (yes, that little patch in between France and Germany) and I am fed up with having epilepsy.

I am diagnosed with partial complex epilepsy. The doctors say it might have something to do with my birth. I was born with the navel string wrapped around my neck twice. I had a score of 2/10 on my Apgar test. Doctors told my parents to prepare for the worst.

But I got through. 18 years I had no problems whatsoever. I got my graduation at high school and got set to study criminology at the university.

Then I got my first seizure. I was playing guitar when that happened. My mom whas vacuum-cleaning, so no one heard anything. Apparantly, I came down with a weird look in my eyes and sat down on the couch, wich had a cleaning product on it at the time. My mom thought I had taken drugs (which, in retrospect, might of been one of the better options ). When I regained my consciousness I went back upstairs and all my guitars (yes, I have quit a few) were fallen domino-wise the one onto the other. The one in the corner took the blow and had a big hole in it.

Hooray.

Then I had some more seizures, then I got diagnozed, blablabla, most of you guys and girls know the drill.

From then on, epilepsy 'invaded' more and more into my life. And that's what I have a big, big problem with.

First I just had a seizure and a broken guitar. what the hell??? A broken guitar just because I had a seizure? Where's the logic in that? That felt like a punishment for... For what?

Then I was diagnosed. Then the doctor told me to take medication for the rest of my life. Then I had some more seizures. Under Keppra (why do they make those pills that huge anyway?) I did 2 more seizures. All of those were linked to exam periods. Each time the exames were coming, my friends/fellow students were nervous because the exames were coming. I was too.

Because I would have another seizure.

Then I switched to Tegretol. great pills, no side-effects, no more seizures... I was feeling releaved. I felt like I had a truce with epilepsy, an armistice. I took the pills and in return 'it' would leave me the hell alone. I took the pills. I felt great under the pills.

I trusted the pills...

And now I just had my last seizure. In a car. While driving.

I could have been dead.

No one got hurt (including me) but there could have been people injured. killed maybe. What would justify that? How would I ever be able to live with the thought that I caused the death of someone?

Back to me as a person for a moment, just to know where this is coming from. You need to know some things:
I enjoy life. I live it to the fullest. I love all that I do, I have a great girlfriend, love music, love playing music, love teaching music. I studied not because I had to but because I was priviliged to. I am interested in everything that has even remotely to do with criminology, criminality and the reaction of just about everything that has to do with it. I studied it with one goal: to become a police officer. That was not just 'a job', it was a privilege, an honor

A calling.

That became clearer and clearer to me. I was ment to be, borned to be, destined to be a member of the police. My set of values, my beliefs, my view of life, of the world, of society, it all fits into that. But I can't.

Because I have epilepsy.

All medical reasons why you can't be a policeman here in Belgium 'can lead to exclusion'. meaning that every case will be subjected to individual evaluation. Epilepsy however 'leads to exclusion'. No buts. No individual checks. Not a chance. Now, i'm not stupid. I know why not every guy should become a police-officer. But it's not a story of black and white. A lot of things are wrong (to my personal opinion). But enough of that, maybe for another time.

Back to my last seizure. Not only did I loose my car (yup, total loss), I actually are not allowed to drive one for a full year (and yes, again, I'm not stupid, but just follow me on this.) These are things that are used in our justice system to punish people. Seizing a vehicle. Seizing a driver's license. because they got drunk and drove, because they took drugs behind the wheel, because they ignored a red light...

But I got it because I have epilepsy.

I had that accident on the way to work. In belgium, that means that the insurance of my employer should cover the expenses. But they won't (for now, my case hasn't been decided yet) . They don't consider epilepsy as an 'external' cause (being another person crashing into me, a broken traffic light, whatever) but an 'internal' cause (being me taking drugs, being drunk). Basically, what they're saying is they don't want to pay because it's my fault. I now have to go to some stupid doctor for whatever he needs to check (I have epilepsy, duh) and then they'll 'reconsider' my case. I just think insurances have to do what they are ment to do. We pay them so they would pay us. Now there's this great fuzz about a simple crash wich otherwise would already be handled with.

Because I have epilepsy

It's too much. I like living my life, but more and more i can't. Because of my epilepsy. It becomes like this big iron ball that I need to drag along. And it only becomes heavier.

Don't get me wrong. I'm not suicidal. I'm not having any strange thoughts. I like life too much for that. i'm a positivist. An optimist. A 'la-vie-en-rose, always-look-on-the-bright-side-of-life kind of guy. But being so does get more difficult. Since I had epilepsy, there was this small voice in my head. 'don't stand here'. 'Don't do that'. 'Is anyone here aware of the fact that you have epilepsy?'. 'Did you take your pills already?'. 'I wouldn't go up those stairs if I were you'. 'Can you imagine what would happen now if you had a seizure?'. That little voice hasn't changed a bit. And even worse, since the accident, it's right. It just keeps shouting at me though a megaphone since the accident. I want it to shut up. But it won't.

Because I have epilepsy.

I just hate the fact that I'm 'condemned' for having epilepsy. And, because I studied criminology partially because I absolutely hate injustice, that thought is more and more heavier to bare. I feel this as injust. Yes I have epilepsy. No, I don't like what that implies. I don't feel it has to. I should have the right to live my life like everyone has the right to do that . But then again, yes, I'm not stupid, but in the end, and all things considered, I do feel all this as a punishment for something I didn't commit. I cannot change my epilepsy. I cannot 'attack' my epilepsy, just like you can cure a fever or try to cure cancer, My hands, everyones hands are tied. When epilepsy comes, it comes. When I have a seizure, I have a seizure. It litteraly is the sword of damocles sword. It can happen anytime, anywhere and it does not give one damn about what you're doing at that time. Playing guitar, driving a car... screw that, here comes epilepsy. It is unforgiving. And no one can stop it from doing so. Sure, they can pump me full with valium, but what good does that do anyway. They do it because nothing can be done about it. And all of this because my brain is messed up. Because one stupid neuron backfires.

God, I would like to have a go at that one.

I know that this site is all about coping with epilepsy. But I don't want to cope with epilepsy. I want epilepsy to cope with the fact that I want it the hell out of my life. And yes, I know this is logical and that I have to look out for denial, bargaining, depression and acceptance, but I really think I will never accept the fact that I have epilepsy. And again, I'm not stupid and I can see that that will maybe even be harder than to just accept it. But hey, I'm a stubborn man.

So what is next? Apparantly, there was no light in the darkness after Tegretol. But then, a spark. A spark called 'Vimpat'. All studies are really good promising (big trap there) but It's not really been on the market for so long. So, long-term side effects are still unknown. Do pray for this to work. And if you're an atheïst, do light a candle or something. I am hopeful for this thing to work, but I do catch myself looking at the great big black hole behind it.

Yeah, I'm scared. I really shouldn't. All because i have... well, you get the point.


Right, all said and done. If you stuck with me all the way to the end, congratulations! And thanks for listening/reading. If just one of you did read this, then I'm a happy man. Please, feel free to answer me on this one.

And yes, I know, i should be happy to 'just' have that type of epilepsy, yes, there are cases far worse than mine, I know, some people would love to trade with me etcetera. But I believe Einstein. Everything is relative. I see a world of happy people (I know, some of them are keeping up appearances). But I'm not really one of them.

I don't want to cope with it. It has to cope with me wanting it out of my life.

Thanks,


Bram

 

[epileric]

Welcome bramovitch

Having a long story is nothing to apologise for. Also, your English is very easy to understand.

I hope you don't mind but I moved your post into the foyer of the site since that's usually where we introduce ourselves.

I've had epilepsy all my life so before I was even old enough to drive I was told that I'd never be able to. Odd how always having seizures makes it easier rather than having them imposed at a later time.

Don't feel you cannot do anything though. Try to understand your "disability" & determine exactly how it imposes borders on you. That will help you determine your abilities so that you can decide what direction you want to take in life.

 

[Nakamova]

Hi Bram welcome to CWE!

Feel free to vent -- we get it, we really do. Having a seizure, or a seizure-related accident, or a loss of independence, or a nasty fight with the health/insurance establishment -- these are just a few of the frustrating things that people with epilepsy have to deal with. All the time.

I just hate the fact that I'm 'condemned' for having epilepsy.

However, here I beg to differ. None of us are condemned. You say you are stubborn -- good! Let that stubbornness help you to take control of epilepsy and not the other way around. Don't focus on the things you can't do, take stock of all the things that you can and will do in the future. Don't obsess about what epilepsy has taken from you, acknowledge what you can take from it (among other things: empathy, perspective, compassion for others who are suffering) and move on.

And on a practical note: As you know there can be plenty of trial and error in finding the right right med at the right dose. Maybe Vimpat will be the magic one for you -- I certainly hope so. Maybe the Tegretol would work for you at a higher dose. There are quite a few epilepsy medications out there, so don't give up. There are alternative approaches to consider as well (see http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments) and ways to be generally proactive about your health (http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/).

Best,
Nakamova

 

[N Sperlo]

Hey Bram.

I have a degree in criminal justice. I was diagnosed general absence epilepsy, similar to yours. I lost my license a few times, but never had accidents.

I am an armed guard and race cars for fun.

You can't give up on dreams, but always have a back up plan in case things fail. I am controlled now, so I can keep going on with my life.

Never Give Up.

 

[arnie]

Hi Bram, and welcome. I was 24 when I had my first witnessed grand mal (tonic clonic) seizure and got the diagnosis of epilepsy. I'm 55 now and even though it still plays a part in my life, and it's pretty much always with me, I wouldn't say that it's had a huge effect on the overall quality of my life in the long term. It took a little while (6 or 8 months maybe?) to get things sort of stabilized to where I only have simple partial seizures, but I still have several hundred of those every year. They're not really debilitating and they have never affected my job or family life or various interests, except to make me kind of fatigued if they are exceptionally strong.
Anyhow, that's my story in a nutshell. I won't try to tell you that "everything will be all right" or that "you will learn to live with it" because I know that hearing things like that is not usually helpful when you are in the place that you are now, but I can reassure you that for me (and for many of us here) our epilepsy just becomes another aspect of our lives that we have to control as best we can, and not let it control us.
Keep in touch!

PS: when you said you are from Belgium, I was reminded of the singer Jacques Brel. Isn't he Belgian? I really like his music. I know you are in a different generation, but do you like him? Do people even listen to him any more?

Carry on!

 

[bramovitch]

Thanks for the replies all.

To Epileric: that's what is getting me, what I see as those borders, imposed by my epilepsy, they are getting too far in my way. I kind of made my mind up about what I wanted to do with my life. But alot of that now got jammed up by (the consequences of) my epilepsy. I guess it's like being back to square one.

To N Sperlo: I know for a fact that I will never stop being frustrated and being angry. Or, well, that's how I think/feel at this moment.

to Arnie: haha, indeed, Brel was belgian. He is one of our famous export products. He has become an 'edith piaff': everyone here knows who he is, why he is famous but no one (or, well, most of us) would be able to give you three titles of songs he wrote. It's like Belgian beer, we know we're known for it, but we have no idea why ours is so good Allthough I do have to mention that 'ne me quitte pas' does make it on the radio on some occasions.

 

[KatieCoy83]

I enjoyed reading your story. You write very well. Here's a bit of mine. I was having absent seizures all my life but my parents just thought I daydreamed a lot so they never caught on. Right after I turned 25 all hell broke loose. A mass of blood vessels burst and scar tissue after surgery kept me epileptic (even though they'd been "sure" I had a 96% chance of being fixed. Wrong!).

Anyway before that I had finally gotten my own apartment, paid off my car and got a great job working with special needs kids (ironic huh?). Then boom....all gone!

I am on disability but temporarily. Can't drive but I still have my car just in case.

But my silver lining came within it all. In the last 5 years since then I met and married my husband. I had a fairly normal pregnancy and now I have a 2 year old.

It's odd to think that if I didn't have epilepsy I'd be on a completely different life path and not be where I am today. Everything happends for a reason right?

Welcome to the forum.

 

[#infome]

hi bram, to follow the other guys you write well, be proud that you seem to pull off anger with humor. Maybe deep down your not as angry as you think, I'm a pretty positive person so take that as a compleament. I'm also a chatter box so excuse me if the txt is long (some times think my petit mal's are the only time I shut up. lol. My ep. sounds very similar to yours. I was diag.@ 11yrs.Head injury done it so they think. Never told friends through school yrs, too embarresed (check out my....page, is that what its called?) In a nut shell, yea be angry .We are blesses that its "petit" mal. However it is a royal pain in the.....! I can't drive, be a nurse, do work expierence in a zoo!(random I know) I was just as mad. I suppose I know my ep. Well I thought. Loads of mad stuff gone on in the last few months that has totally threw me. In a mad way I guess its better the devil you know. This changes are making me mad. You tend to plod along , its a pain but it could be worse. And even this little "tiff" me and my ep.are having You just have to go with it though it sucks ,I know. Try not to let it freak you out about how safe or unsafe you may be. A life lived in fear is a life half lived.
Keep the humor and keep in touch even to have a good old moan.