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I've had the big E for years, but still can't cope...

Sat, 04/15/2006 - 10:27
OK, people prepare yourself. I apologize in advance to anyone I might offend in this, but nobody else seems to know what I'm going through here, and I found this site, so maybe someone can listen and understand. I'm just so tired of being alone with this, so here goes...I don't know what to do anymore. I've had the big E for 23 years now (I'm 27), and it's still harder than it ever was. When I was 4, I fell and started having seizures. All kinds. So they put me on TONS of meds to control it, and turned me into a zombie in the process. I was poster child for the Epilepsy Foundation, or something like that in 1986. Then they discovered Tegretol, which is what I took 'till I was 9. My doctors then told me that since I hadn't had seizures in a few years, I'd grown out of it, so all was good. But when I was 15, I had a grand-mal in school, and have had nothing but the big ones ever since. It sucks, HELLA. People look at you different, and since I'm totally incoherent when I wake up, I'm incapable of stopping myself from reverting to a child-like state. Then there's the deal with my shoulders. When I had that one at 15, I fell and totally screwed my shoulders, making me unable to so much as throw a baseball, let alone defend myself without dislocating my shoulder. Look, I don't wanna hear some fake "you'll be ok, I care about you" from a bunch of people I don't even know, and I'm not trying to be a dick by saying that. Thing is, I'm just beginning to not care anymore. This has killed my life in just about every aspect possible, and there's no way to fix any of it. I know that I got to being a screw-up by my own accord, but now, I can't get to being anything but that. Every time I have a seizure (about once every couple of months, whether I take my meds or not), I f uck my shoulders up, making my arms all but unusable for a good week, I bite my tongue, making even a small action like eating or talking an excercise in hell on earth, and I live at home 'cause I can't get a better job than the menial, high school kid salary 'cause I can't afford school. Hell, even if I could afford school, I couldn't put in the time, 'cause I can't keep my attention or thought process with it long enough to follow through. What the hell is wrong with me?!? How do any of you live a fulfilling, meaningful life with this? Better yet, how do you get past that point of not caring if you ever hit it? I'm supposed to be living it up, but anymore I just plain don't care. I don't care about women anymore, I just hide in my room for fear I'll have another seizure in front of someone, I get pissed every morning 'cause I woke up (not at myself for having woken up, just pissed that I have to face another day). I've been dealing with this almost my whole life, and I'm so tired. I know it isn't gonna happen at the snap of a finger, but I just want to be normal. I hate this, I hate myself now, and I hate the world. I hate the fact that I don't have any friends left 'cause they all freaked out when they saw me have a seizure. I hate the fact that even my own family helps me out and hangs out with me 'cause they feel sorry for me. And I especially hate the fact that I can't just give up on it all, 'cause it'd hurt too many people that I still care about, and I just couldn't do that. I've tried councelling. They don't care about me. They get paid one way or the other, why should they care about making me feel good? I used to do stuff like drink a lot and do drugs, but that just put a cramper on my finances and kept me from doing anything else, so I quit. I was alone in that circle, as well anyways. It's amazing how weird people look at you and treat you when they see you have a seizure. What's even more amazing is that the reacions of the people I dealt with, the absolute weirdest, outlandish people in society. These people are supposed to be accepting and open to anyone, no matter how they look, how they dress, etc. But have a seizure in front of them, and they all of a sudden treat you like you weren't of the human race anymore. Girlfriends, friends, it's all the same. I have a couple (read:5) of friends that I've had for the last 16 years, but I suspect that they're still friendly to me 'cause they feel bad for me. In fact, I've had mutual aquaintences tell me that's the case. So what the f uck? Tell me, why should I even care anymore? I don't have friends, I don't have family I can trust, no good job, no insurance I could even think about affording. I tried Medicaid and Medicare. Know what they said? I'm a young, white male, that can hold down a job of some kind. I'm not trying to sound racist by making that remark, I'm just saying what they told me. They also told me that it doesn't matter that I can't pay for anything aside from bills. It doesn't matter that I get hurt every time I have a seizure. At best, they'll give me coverage for 3 months. 3 MONTHS!!!! What the f uck am I supposed to do with that? I'm tired of being a drag on my family. I'm tired of worrying whether I'm gonna have a seizure or not every time I step out the door. I talked to my doctor, and he said that in order for me to lead a semi-functional life, Tegretol XR is the only medication I can take. Otherwise, I'd be a zombie. What am I supposed to do now, huh? I'm 27 years old and I've never had my license. I can't watch TV in the dark 'cause I get dizzy. What did I ever do to deserve this? What did I ever do to bring this onto myself, and more importantly, what can I do to make it all just go away? I had FRIENDS!!! I had a LIFE!!! I had DREAMS, godammit!!! I WAS A PERSON!!!

Comments

Re: I've had the big E for years, but still can't cope...

Submitted by Newyorkcita on Fri, 2009-12-04 - 00:45
I understand your anger, especially as a guy. I am a married woman and my husband supports me but he has a lot of resentment. Sometimes I feel mentally retarded(no harm to retarded people). I moved slow and I space out. My thoughts don't make sense a lot of times and I am helplessly disorganized. I have two children and the thought of having to care for them on my own really frightens me. We are in dire straights financially, without a stable place to live, moving around a lot with two small children and I can't work. I look perfectly fine and healthy, but I do dumb things all the time because I'm not paying attention or I forget. Sometimes when I read the forums here, I realize that it could be much worse for me. I went out with my children the other day and I saw a lady with a newborn baby and her face was badly burned. That was days ago and I can still see her face, because she wasn't trying to hide it. I could feel sorry for her, but she is a survivor, going on with her life and her scars. I guess that's what we have to do. There is always something to be learned as long as you're alive.

Re: I've had the big E for years, but still can't cope...

Submitted by tallgal on Sat, 2006-04-15 - 10:47
Wow, you have expressed quite a lot of feelings, especially frustration. I think most of us here can certainly understand and empathize with you on what you are going through. Let me be the first to reassure you that you are NOT alone! We are here for you. I'm going to keep this short, because I want you to see a response quickly. Let me know if you want to chat or otherwise communicate. All my best to you.

Re: Re: I've had the big E for years, but still can't cope...

Submitted by bassdesires on Sat, 2006-04-15 - 11:01
Thank you for your response, and your being there. I just don't know why I should care anymore. I'm just tired of it all. I don't feel like a person anymore. There's just too many questions that I have that will never be answered, and too many things that I've had to deal with and just so sick of it all. I think I can sum it up in three short words. F uck it all. Tell me something. If I can have some semblance of a life, then why haven't I already? Why should I keep trying? What point is there when the light at the end of the tunnel is just a the light of a train on a collision course? In short, why try if failure is the only possible outcome? I don't think I want to give up, but I see no other logical action.

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