January 23, 2009

Epilepsy and A View of the Self...

I know that when I think of myself, I usually try to leave out epilepsy. I know it is a part of me, but I prefer to think of myself in more expansive ways that leave out the invisible marring epilepsy has left behind in me. 

To the right is a painting by Evelyn de Morgan. I love her work and like to include it because of the themes she enjoyed painting. This painting, "Luna" comes close to what I think of myself. Ethereal, healthy, protected, redheaded. No trace of E. visible!

Still, one has to account for the damage E. has done to one's psyche and so another painting below and to the left is a kind of grim example of how I feel having E., at least at times. Not always, just sometimes.

Often, I feel as though I have burdened my family, my friends and I am fearful I will burden strangers with my condition, as well. It makes me feel estranged from humanity, even freakish, and so the second, contrasting illustration is a kind of visual description of those feelings.

Still, if I feel like this, how do others feel about me when they know I have E. It is a question that should be asked, not for self-pitying reasons, but in order to get a better handle on the ways people percieve epilepsy and those of us who are disordered by it.

I know that many folks have a sense that E. somehow makes those of us with it degraded in some way. As if we are less because of it. As if we have been polluted by some evil.

There are others who  use the presence of E. as a means of acting violently against the individual with it. Parents who beat their children to cure them of E. are not uncommon. 

And many of us know how it feels to be refused housing or employment once our condition has been revealed. 

Some of this is fear... Some of this is cruelty, to be sure. Some of this kind of behavior is learned cultural response. E. has been around as long as there have been humans, so there has been plenty of time for people to develop a cultural reaction to its presence. 

But no matter what one's experiences have been, one must learn to cultivate a different self image. I like the self image of "Luna" and I cultivate it, and as I grow stronger, I am more and more able to affect others toward 
creating a better self image to go along with a stronger interior life. Then, the face I present to the world becomes stronger and better able to live in our world, even though I know there are still many who feel negatively toward my condition. 

I will not allow them to express that toward me. It has to stop somewhere.


E. Rachels said...


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Eric said...

Just want to say I like the look of your blog. I'm rather new to all of this, and I named it after my dog, and dog-related things, but I talk about my E, too. My blog is cally Dollyblog