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July 17, 2013

Hi everyone! This update is taking a step away from my story with epilepsy.  The other day I scrolled through twitter for a couple of minutes and was surprised to read a couple of twitter people talking about bullying.  People with epilepsy and yes that is why they were/are bullied.  I was utterly shocked to read what some of these people have been through.  Bullied because they have epilepsy.  I’ve been trying to type this post for two days but complete shock keeps me from being able to write what I want.

I go back and forth with a few people on twitter who have epilepsy.  Not every day, except for Sazzle.  She and I tweet almost everyday.  Seven months and I know this because of our blogs – we both started them in January.  The other day bullying was mentioned by several in group tweets.  I couldn’t believe it.  We all know bullying happens but it should not!   There is no reason for it and its cruel.  The idea that an individual believes he or she has the right is utterly disgusting.  These people were diagnosed when they were young.  Something I just can’t relate to.  Yelled at, laughed at, beat up, ganged up on, treated like they were/are contagious, treated poorly at work, less pay, babied.  This is what I remember them telling me. They have and still suffer and a big reason for that is because many people do not understand epilepsy.  Do you think bullies ever stop and think, ever so briefly, about the hurt they in-flick not only on the person but on their families?  The struggles that have been taken on?  Nope!!  Some people in the group I am referring to have been treated so poorly in so many ways yet most of them hold no grudges.  I am not sure I could do that.

I feel so fortunate.  How was I blessed to have late on-set and not have to deal with what others in the epilepsy community have had to? I’ve had epilepsy for 10 years.  I have wonderful support from family and friends.  I have never experienced any type of bullying.  When I worked I was never uncomfortable.  As a matter of fact my boss was amazing about it.  She knew that I was self-conscious and at that time I had seizures ALL the time.  She was very subtle about it yet always made sure I was ok.  Never pointed it out, never babied and certainly never laughed.  I fell in the parking lot one day and she saw me and casually walked over.  Another lady ran and was all – oh my god are you ok?  My boss grabbed my hand and helped me up and said “everything good?”  On we went. The beauty of late on-set,  I could have and would tell someone to fuck off if they made fun of me.  When your 8, not so easy.

My family, my family of friends, my dance family – they do so much and put up with a lot.  My ever-changing personality, my brown aura and sarcasm that can sometimes come across as questionable.  I was never aware of the epilepsy community until I started my blog.  I hope to help spread awareness in some way.  Peace out to my twitter group!

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