you are so right.
speaking for my daughter and me personally it Annoys me more then anything for her to be having a seizure and people laughing.I know they dont know shes seizing so I say nicely as possiable "shes having a seizure please dont laugh epilepsy and seizures are a serious thing!" which usually works. but it would be nice for that to NOT happen. It happened in a Neuro office before her medicine.Ive had doctors laugh!Because they thought it was a cute baby thing. Its not funny Its not cute .I wish she didnt have them or they werent so noticeable..
--- In epilepsy@yahoogroup
>
> This is a topic that has much risk for getting out of control very quickly.
>
> For anyone with any type of seizures--the reality is we can never
> compare our situation to anyone else's. Our life is our life. It
> effects each of our lives so differently that we cannot judge our
> situation in comparison to each others.
>
> I will only give my own story as an example. I do not suffer from
> generalized tonic clonic seizures-but have had many marks, black blue
> and otherwise, was stared at pointed at and even laughed at by children
> and adults because of the bizarre things I have done. I was told to stop
> swimming alone due to the risk and to never take a bath when home
> alone. All of this from the multiple daily seizures I was having. It
> never would have mattered to me how many people did or didn't notice my
> seizures, regardless of the type--they debilitated my life to the point
> I finally needed to have a right temporal lobectomy.
>
> To me my story is MY story and I never compare it to anyone else's
> because we will each always find a way to make our story worse or
> better. If we began playing the "grass is greener" game in our lives we
> start focusing on our circumstance so much that we lose sight of the
> fact that our lives contain so much more then this one thing.
>
> I share my story because through that we all learn and find support when
> we feel we are ready to fall.
>
> Kelly P
>
> Tammy Wolfgram wrote:
> > Hi Uhura,
> >
> > Speaking as the mother of someone with generalized tonic clonic
> > seizures, I think you are very fortunate to have seizures that others
> > don't notice. No sore muscles, cuts or abrasions, black and blue
> > marks or broken teeth. Your risk of falling or drowning or other
> > serious injury are also very low. I understand that you feel people
> > may wonder "what's wrong with her" when you stand and do nothing for
> > a period of time, but in the grand scheme of things that is not so
> > bad. My daughter was taunted and made fun of in middle school because
> > she had several seizures there. I would have given anything for her
> > to only have seizures that no one else noticed, to be honest with you.
> >
> > Please don't take offense. I just wanted to give you the perspective
> > from the other side.
> >
> > Be happy with yourself.
> > Tammy
> >
> >
> >
> >
>
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