I’ve written this in previous posts and I’m going to say it again. There are a few remarks I find ridiculous and frankly quite ignorant when they tumble out of people’s mouths:
-”Oh my, you have Epilepsy, well, I can’t believe it…you don’t look sick at all…” (When in reality they have no idea what Epilepsy is and what’s involved. They think you should be branded or tattooed with a giant E on your forehead)
-”Wow, you can’t drive…I could NEVER survive my life without driving. OK…great to see you. Bye-bye. (and they high-tail it out the door and leave you in the dust)
-”Oh…you have a child with Epilepsy???” (And they scrunch their noses or raise their brows as if to question your existence)
I’ve heard the first two on more occasions than I care to recall. No one has ever uttered the third comment to me directly because Hayden does not have Epilepsy, but people have come right out and asked me if she does. People have even been so bold as to ask if ‘I infected my daughter’ by giving birth to her. It always amazes me how blunt people can be.
I suppose the point to all of this is, I had a conversation the other day with a very old and dear friend. She is one of those people I count as being part of my ‘team’ (and there aren’t many of them). She’s someone who never questions why or how, but she understands the limitations and the needs. I was feeling upset, frustrated and frankly downright stranded because of the way my life is restricted. But she had to remind me that unless I open myself up to accepting the help, chances are it won’t be offered. People are busy and self-absorbed. They have their own worlds and their own lives to worry about. So, it’s ridiculous to think that they would remember that you might need a ride or assistance because you have Epilepsy. Speak up! It’s sort of like, ‘Talk About It!’ Only, it’s about your needs. It has nothing to do with pity, but it could have a lot to do with Epilepsy awareness.
Jeff Nelson
January 15th, 2010 at 12:40 pm
We can’t expect everyone to know all there is about E if they don’t have it or don’t know anyone who does. There are plenty of disabilities that I know nothing about and I don’t concider myself an ignorant. Despite being a sensitive guy, I have had to learn to work up some tough skin when it comes to peoples reactions. No madder how loving and compassionate humans can be, we still have animalistic instincts, and survival is the core of them all. Only the holiest of holy’s doesn’t live in a self absorbed world, so I try not to take it to heart if someone takes a step back when I inform them that I have E. I figure it’s a natural reaction. Most often, I have found it’s when they see me keep on truckin’ through my daily challenges with a smile (sometimes just a grin) on my face that they are more curious than afraid.
Mary Lou
January 15th, 2010 at 1:23 pm
Alysse,
Love your blogs—the honesty, rawness of emotion, the explanation of epilepsy’s impact upon your life. I only read a few but intend to read all.
All experiences are different—Yours as wife, mother; my own as mother of a son w/ epilepsy. Those individuals that are controlled with a single med, those that are on several PLUS VNS (as Michael, my son). My passion is to get the word out about epilepsy and to focus particularly on advocating for the seemingly “forgotten” ones (at times)—those whose seizures are not fully controlled.
At any rate—all that being said, I just want to say hang in there or as my Dad always said “hang tough”and by all means keep these fabulous posts coming!
Mary Lou
KW Greulich
January 15th, 2010 at 2:09 pm
I can sure identify with some of your comments. When I had my first Grand mal seizure I was scheduled for the government to fund my going to grad school as a permanent employee. My boss cancelled that imediately telling me that his sister, who was a mongoloid, had seizures and was mentally retarded and he assumed I was. This made no sense because I had already graduated with honors from UC Berkeley and he had been gone 9 of the previous 12 months on military duty and I had successfully done his job. He tried to force disability retirement. Since then I have worked 30 more years, gotten a masters ( Only one class did I not get an A. ) and I am still working. In that whole time I have not had a promotion or gotten a job I wanted.
Kim McCray
January 26th, 2010 at 9:15 am
I work in healthcare with many people that have seizures just like me and live a completely normal life otherwise. After having a seizures myself a co-worker suggested that maybe it would be a good idea if I did not work in patient care. I was so upset but understood that her comments were a result of her being uneducated when it came to epilepsy. Now I find myself being very cautious with who I share that I have epilepsy with. My husband had a very hard time understanding and after having him read the Epilepsy Advocate and talking with my physicians he understands a lot more. I make every effort to live my life how I want too and not let the disease or others dictate what I can and cannot do.