Wednesday, October 28, 2009

[epilepsy] Re:Seizure in public

 

Hi Jackie,

I think that is part of the reason that the stigma surrounding
epilepsy lingers. People hide it instead of being loud and proud. I
can understand the problems many have with finding and keeping jobs
due to their epilepsy, but if more people would come out and let
people know that they have epilepsy, like that football player for
the Jets did last year, people would start to realize that epilepsy
is everywhere, is nothing to be afraid of, and maybe people with
epilepsy would begin to be treated better by society as a whole.

Megan is on a one woman crusade to let people know that she has
epilepsy and it is just part of who she is. I think I've mentioned
this before, but her IMing name is "OneHotEpileptic" and she is the
first to crack jokes about epilepsy. If you know her more than twenty
minutes, she will likely tell you about her epilepsy. She views
epilepsy as a major pain in the butt at times, but mostly as an
inconvenience that she has to work around. I think that the fact that
my husband had been diagnosed with a deadly form of cancer, probably
influenced how we parented her. I figured anything that wasn't
terminal wasn't a big deal. (And yes, I know people can and do die
from epilepsy. I'm speaking in terms of likelihood of dealth from a
disease or disorder.) We were determined to keep the kids lives
normal while their dad fought cancer, and just as determined to keep
Megan's life normal in spite of her epilepsy. Megan is lucky in that
her seizures were fairly well controlled by meds, particularly when
she was younger.

I know that there are many children whose seizures are so pervasive
that they cause slow maturation, etc. and I have a great deal of
sympathy for them and their parents. I hope that answers can be found
for these more damaging cases of epilepsy.

Take care,
Tammy

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