September 28, 2008

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!


Serene Low said...

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.

Serene Low

Linda Shattuck said...

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

Brian aka Brainskip said...

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)

rsorrin said...

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!


Haley said...

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.

Carrie Noonan said...

You are someone I can finally look up to. I am a self hating, maybe even suicidal epileptic, but have a wonderful beautiful family. I am only 31 but this started at 9. There was a lot of doctors mistakes within my diagnosis and am on disability now. I have learned more on my own than any doctor could ever have told me. I have been in some very dark scary places I thought Id never smile again, but it helps knowing people like you are speaking up. I have Tonic Clonic seizures around once a month (hormones), I also have Complex partials daily. The VNS helps some, but thats not really what is hard and its hard not having anyone to understand the other parts that cant be seen. I was a single mother for 4 years and worked full time as a cna but I could not do it anymore after I broke my back the 2nd time. You are an inspiration. Carrie Alisha Noonan

Anonymous said...

Hi Paula, i feel the same way. I HATE the unpredictability. I've been 3 years seizure free, first time ever. Then a few weeks ago I had a grand mal. Omg that ruined everything. During my 3 awesome seizure free years, I finally got pregnant after 8 years of trying. I was content that maybe it was over with. I have a funny 9 month old, and 5 months pregnant with another one! I thought it was great. Then I get a seizure... While 5 months pregnant. 10 mins after the ultrasound that day.

Now I'm scared, will it happen again? I'm going to have a newborn soon, how safe am I around the babies? I can't even take my 9 month old for a stroller ride around the block . I HATE the epileptic part of myself. The unpredictability, the depression, the wondering, the hoping that I don't end up confused for ever. I feel your depressive side. I was starting to feel like a woman, then it had to hit me again.

Anonymous said...

Hello, I have been living with epilepsy and I totally understand how you are feeling. I wrote a science paper in high school about epilepsy and that is when I realized that the doctors don't really know what causes it or how to stop it. When I hear about things like brain surgery I get a little spooked, because I know that I can't live without my brain. I've become skeptical and hateful of doctors. When I heard about medicinal marijuana I was grateful because I knew that it was something that people had been doing for thousands of years for spiritual and recreational reasons, but when I mentioned it to my doctor, even though it is becoming legal in my state, they gave me nothing but their contempt of it, claiming lack of evidence. For people who claim slicing your brain in half works I find this particularly disgusting of them. I have always tried to be brave, to be personable, and that has helped me, but sometimes my sorrow is too much for me to handle. The political fight going on right now is also hard for me right now. I have chosen my side however. All the evidence I need that it works is that people enjoy it. After all, they haven't been successful in stopping them with their methods, so who are they to criticize?