It is not length of life, but depth of life

[tinasmom]

Thank you for all your kind words, but I think that everyone on this site is an inspiration to me. It's because of sites like this that I have the knowledge to help others. I can't begin to tell you how much I admire all of you for sharing your stories. Unfortunately, Epilepsy still has a stigma attached to it and when people aren't educated, there is fear. I can't imagine living with seizures and not knowing when the next one is coming. I can only help educate people and stand up for everyone that has Epilepsy.

 

[Shutterbabe]

Stigma's....

When I was first diagnosed with Epilepsy 4 years ago my doctor warned me to keep it a secret and only tell those close to me. I looked at him in amazement because I lived my life out in the open and did not feel I had anything to hide. He went on to say that no one would even want to walk down the street with me anymore in fear that I might seize.

 

[tinasmom]

I am very involved with our local Epilepsy foundation and my goal is to educate and raise awareness. We are raising awareness in our community by being in parades and this summer we are going to host a poker run for Epilepsy. The only event that they used to have was the annual stroll. Last year we doubled the number of walkers. Although we can raise awareness, it is still a struggle to educate people. It took us 2 meetings at Nicole's school to get everyone educated. My biggest struggle is getting the entire school district educated. I also think that it is extremely important to educate the students. Education takes away the fear and misunderstanding. I'm going to find out when our next school board meeting is and speak on the need for seizure education.

 

[Shutterbabe]

The Thread Within The Thread?

For me, this is the thread within the thread....

We all need to be educated, to be without fear, to find willing community, to raise consciousness in each other, with or without Epilepsy.

 

[Nancy]

Shutterbabe - when I was diagnosed my sister (my SISTER!!) and her husband refused to go out to eat with my husband and me because I might "fall on my face into the fettucini". She simply didn't want to be in public with me.

My mother thought I should be removed from the family finances (very, very tiny) because I was too stupid and ignorant to handly anything like that.

I could go on and on but ....................

 

[Shutterbabe]

Beyond the Experence

Nancy, I am so sorry that you experienced that kind of reaction from your family. I can imagine how much it hurt you.

One of the things that I noticed in my own life after being diagnosed with Epilepsy was that I was slowly being ebbed out of certain social circles. A "man" I had been seeing for a long time decided that he "did not had the courage" to be in a relationship with me anymore, that it was too much responsibility. I responded that I have enough courage for two people. It hit me later that maybe I am not so fearless but who wants to hang out with people who stand in judgement of something they will not even attempt to understand.

 

[Birdbomb]

Welcome andysgirl1978

Forrest Gump said it best "Life is like a box of chocolates, you never know what you're gonna get"

Attitude is 99%

We are resilient. We have to be, epilepsy is one hell of a ride!

 

[speber]

And LIKE that box of chocolates.....

...we can sometimes be a little nutty.....but that can help too!

iano:

 

[brain]

::: snickers :::

As it's been posted and should be a famous
quote:

"Epilepsy takes you for a very
strange ride!"

And WE SHOULD have a requirement here
somewhere:

Insanity not required,
we will train!

 

[Roncentaur]

Shutterbabe - when I was diagnosed my sister (my SISTER!!) and her husband refused to go out to eat with my husband and me because I might "fall on my face into the fettucini". She simply didn't want to be in public with me.

My mother thought I should be removed from the family finances (very, very tiny) because I was too stupid and ignorant to handly anything like that.

I could go on and on but ....................

Hi Nancy,

When I read how you have been treated by your mother and sister, it brought back unpleasent memories of similar experiences I have had which have deeply affected my self-esteem. It has also reaffirmed my belief that a shocking percentage of the world is insane. Just try to remember that even though we share the same gene pool, there is still a good deal of genetic variation among members of a family. I suspect that the genes for intelligence went to you. Stay healthy...

Ron