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Speaking Out on E?
Fri, 08/04/2006 - 08:15Sure we've got epilepsy, and we've learned the challenges surrounding it. Not only the medical ones, but the financial walls we have to climb, the employment issues, and probably the most challenging one--the social side. That is, getting those around us (from partner, to fellow employees, to blood relatives, to employers) to accept us as "regular" human beings. I'm sure that the majority of us will reply, "God yes, I know of those problems!" However, how many of us actually take the first step socially and start writing to newspapers, magazines, politicians, and TV stations to get them to consider making our thoughts known? Oftentimes, I think that individual letters are far more impressive than going through social service organizations, for they tend to give us the "Now you're going to be alright" advice, then put our file back in their cabinets, left unattended till we call again.
I've been on TV, had articles published, walked in parades here in NYC, to the point where people actually stop me on the street and say, "Hey, aren't you the one they interviewed the other day?". I'm flattered, of course, but am always impressed by the number of those people noticing me and getting into a conversation mentioning that they have loved ones or friends with epilepsy. In many ways, I feel that the attention given AIDS far exceeds what we "epilepsy folks" have received. It's time we did a bit of public relations on our own. Sure, using an organization such as "my.epilepsy.com" is a wise move, but do consider the further things you can do to take the misunderstanding and fear of epilepsy out of the average person's mind.
Start by writing back right now and pointing out specific things you've done. Who knows, you may give this man even more roads to take!
--George
Re: Re: Re: Re: Re: Speaking Out on E?
Submitted by Cathy_C on Mon, 2006-08-07 - 17:28
Wow, I can see myself falling into a lava lamp stand. I do amazing things when I have seizures. I have burnt my hands on a 350* skillet while cooking bacon & eggs for some house guest. I have fallen into a firepit at our camp last fall. I nearly hit a train, I went over the tracks 2 minutes before the train past. I was 3' from the track when my car stopped and had a telephone poll about 2' away from my car on the other side. That is why I have given up driving. I mentioned in one forum where I was at work and had a seizure and started throwing mice into the trash. Didn't they all think that was funny. I really didn't. The mice we order for Lab testing can cost anywhere from $30.00 to $300.00 each. I am glad that was the first & last time for that. Luckily my husband who is also my supervisor noticed me doing it and stopped me. But I have done some crazy things. I am sure we all have. It would be nice to educate people a few at a time. I usually use my seizures for explaining what had just happened. When they see it happen and it grabs their curiosity, I then explain to them and they will go on to asking me about Epilepsy and it gives me a chance to let them know exactly what happens. That way I am not offering information they didn't ask for and not scaring them. I do get to let them know that it only happens when I am tired and over worked, been in the sun too long, etc. Then I can let them know what type I have and not to worry if they see me have one. I tell them just to lay me in a safe spot and watch me til I come out of it if my husband isn't around. Sounds fairly simple to me. I try not to let Epilepsy control my life and I am not going to. I have too much to offer in this world to let Epilepsy take it away from me. I always tell people: "I have Epilepsy, But Epilepsy doesn't have me." Just a little saying that helps me get through each day with. God Bless, Cathy