Sunday, June 7, 2009

Re: [epilepsy] Re:seizures that others don't notice



Steve

I agree with you. If I kept having EP a secret -- that
would be like a big load on my back. I am all for educating people about
anything -- but especailly if it involves me.

Millie

> Hi Elizabith,
>
> Your daughter is 100% correct in reacting like she does (giant smile)!
> The words I always use are so close to hers! My wording always used is
> "YOU JUST DON'T GET IT". What helped me to get others to understand and
> relate to my life concerning epilepsy is being fully open about not just
> the seizures, but the so much more that comes along with epilepsy. I was
> lucky having just complex partials 1-7 each month on average! For me, the
> seizures didn't affect me as much as the rest of epilepsy. As I met
> people I spoke about my epilepsy, I shared with others who I met the full
> story in simple words they could understand. It helped them to understand
> the real me!!! You could see in people's faces what they thought when
> telling people about memory, substituting words when talking, what brought
> on seizures, side effects from meds, depression, (28 years ago coming
> within a vein of taking my own life)!!! Opening up like this helped
> people to know me, treat me no differently because they could see and
> understand the real me! We have nothing to hide long term. Hey, if
> people can't deal with me tuff (use whatever word you like). I'm simply
> me, if you don't like me, that's your problem, not mine! Good for your
> daughter saying what she does, how she does! Good for her to not hide the
> real her from others! I would love walking around with a service dog
> strictly to educate people to realize what they are for, and what the laws
> are! When I hear people with their stories of how a service dog opens up
> their lives, it brings a giant giant smile on my face! Take care, keep a
> smile on your face!
>
> Steve

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