Self-Hating Epileptics...
This is a subject I know something about, so indulge me, if you please.
When I began to write about epilepsy, I had a terrible struggle within myself. I wanted to do a good job and I wanted to bring us all closer together as a community, but I also wanted to try to get past my own self-hating
as an epileptic. I know I am not alone in this, that there are many of us out there who hate the epileptic parts of ourselves.
I hate the pity, I hate the seizing, I hate taking the drugs. I hate the feeling that at any moment I may lose control and make a spectacle of myself or that I will wake up with strangers staring down at me. I hate the whole nightmarish quality of epilepsy and though it seems terrible to say, I don't want to see someone else's seizure, either.
I hate the superstition the surrounds us. I hate the ignorant doctors who know less about my condition than I do and I hate feeling that each time I seize it might be my last time.
I think the quality of an "unknown" end to my life disturbs me the most.
And, the notion that I am some kind of untouchable in society has always bothered me. That has been one impetus for writing my blog, certainly. Because we are neither untouchable, nor contagious to others.
I hate the depression, the clumsiness, the unsteadiness that both the seizure activity brings and the drugs to treat the seizures bring. I am tired of breaking things, crashing into things, etc.
I just had a seizure the other night and so if I sound a little depressive while I write this it is probably because I am... Don't I just hate that too! I mean really!
I can't drive, I don't swim, won't skydive... How much more of a drip could I be???
I lived through the '60's and didn't do drugs, never explored hallucinogenics, didn't get high. Had enough of my own experiences not to want to induce more of them, I guess.
I am bright, capable, and a fairly good writer. This satisfies me. And, I am a grad student, which makes me really happy... But I hate my epilepsy because it makes my brain inconsistent and unreliable.
Will I get over it???
Tune in next week and find out, boys and girls!
5 comments:
Hi Paula,
I am certain you will get over all your hates about epilepsy. The fact that you bothered to express it and write it down in your blog is already a positive indication that you are determined to live your life to the best with epilepsy. Life goes on after having a seizure. All the best.
Cheerio
Serene Low
It was a dark night that lasted more than a week, and I want to thank you for your blog. You are the one person who can say out loud what I can't say out loud for myself, and I appreciate you for it. I wish everyone with epilepsy could read your blog. It's 11:28pm and I've had a week of meds adjusting. I'm tired, I'm spent and I'm depressed. I get mad if mhy family DOES call 911 and I get mad if they don't. I want to thank you for expressing in words what I cannot bear to say. Thank you for your bravery and your determination to educate and comfort all of us. You are brillant and you're doing a wonderful job. Please please know that what you do and say are so comforting to those who lives are fractured at times with seizures. God Bless You! You are a shining star in a dark night. - Linda
Just wanted to stop in and say howdy Paula. Thanks again for your contributions and writings you are such a talented person.
I was diagnosed as a manic depressive along time ago and as of recent I reckon I still am. Its very odd I don't really notice it that much or can't identify with it. Plus many people who know me would really think otherwise or wouldnt even think it possible. I know its there but really can't see it or totally understand it.
I understand the hatred of having to deal with the madness of Epilepsy. It can be so overwhelming sometimes I guess the only thing I can say positive about it is that Im very happy about not remembering it. The first seizure I had ever seen was of myself and not in a hospital situation.
For me I can go in and out of grand mals for days sometimes so when it started at a friends he video taped me at my request. The tape lasted 6 hours and I couldnt watch much of it, but what I saw was something I cant remember even though it is me in the video. My eyes are open and I can not remember, I have the best memory on the planet or at least I thought I did. If I had to say the one thing that bothers me more than all of it combined is this. Knowing I am fuctioning without being home or in control and having to question myself contantly now. I can't stand knowing that I am not in control of myself and hate knowing that I have no control of when or how bad its going to be. I hate knowing I might wake up a week from now or a month and not even know it was taken from me. I hate knowing that I really don't know, or that I'm not the master of my mind and thoughts, that somehow its beyond me and my ability to control myself.
I really don't know if that all makes much sence or not. I could really go on forever on somethings and might have gone to far already, but I can relate.
I hope that things are going well for you Paula and thanks for being you.
Brian (aka Brainskip)
I believe I am a self-hating epileptic. I'm sorry to say. I hate epilepsy ergo I hate myself. I even work for an Epilepsy Foundation! How can I help others with epilepsy if I can't bring myself to help myself? HOW do I help myself? I think I'm making myself crazy with my attitude of self-hate. But I don't know what to do about it!
Rob
Thank you for putting a voice to what I have been feeling. I was just diagnosed with epilepsy a month ago at age 25 after three (what appears to be) grand mal seizures. Dealing with it has been quite a challenge, especially not being able to drive. I, too, am on Lamictal and though I haven't had a seizure in a month, I hate knowing I could seize at any time on any given day. My second seizure occured while I was having lunch in a restaurant with a friend. Again, thank you for writing about your experience. I will keep checking back with your blog.
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