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I have been epileptic for 65 years now. I have lived in fear, shame and self-doubt. I have learned to push back to make room for a life, with some of the ordinary comforts and joys life can bring. Our lives are gifts. But we are responsible for living them. I promote speaking and writing about E. We can all make a difference so keep reading...
Wednesday, June 24, 2009
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A Scent of Angels: Falling into a Tonic Clonic Seizure
First, comes the scent---the Angels are present. Next comes the fall, and I feel a brushing of wings, growing stronger, more intense until ...
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Some of us take a single AED for our condition. Others of us take more than a single drug. Many of us have been warned about the serious sid...
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We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do...
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E. is a heavy label to live with. The culture surrounding it is one of silence and misdirection. It suggests that there is something about ...
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To the right is a painting by Evelyn de Morgan from 1916. It is her commentary of Death on the battlefield. Double-click the image to see it...
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It is not an easy thing to talk about one'’s family. Conflicts abound and committing fact to paper seems to fall short of the true exper...
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How much can a head of hair weigh? Is it enough to cause your neck from being able to hold your head up straight? I have heard that hair ca...
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When I went searching for images of pain and suffering online, I was surprised to see that many of those images had to do with tear...
3 comments:
Hi Paula,
Many of these things I've heard before. Some of them I have not. I especially don't like the comment about how I get something out of being "sick".
However, sometimes I think "suck it up." I sucked it up, I got out of bed, and I got a job. I don't think its right to feel that way, but I do.
Rob
I also sucked it up, and after getting fired at work for having a seizure, I tried to get another job, and now I'm a dishwasher at a rest home. It's a third of the salary. I didn't have to reveal that I had epilepsy, but working in a kitchen with open flames and knives, I thought it best to be sure they knew. That dropped my salary by two-thirds. And "they say" it doesn't matter. It does, and it sucks sometimes. I used to work in television and they never knew, until I had a grand mal. It was all over then. They also let my husband go and 5 other employees that backed me up and tried to defend me. They said "we looked up your condition on the internet and it doesn't exist, therefore, it doesn't exist."
I think I should also say that I have a job at an epilepsy foundation so I'm relatively safe, although you never know for sure. I have had plenty of disappointments in my working career. Some were created by myself but most, I think, had to do with my epilepsy. Had seizures, admitted I had epilepsy, needed accommodations, etc. So its really not fair to say I "sucked it up" without mentioning those things. But, still, I need to work on changing my opinion of others who I say should just suck it up.
Rob
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