People's Ignorance

[KellyD]

Hi Everyone. Some of you know that I'm pretty new to all of this epilepsy stuff. We have (or should I say had!) no family history of it so my diagnosis was a bit of a shock as was my son's. I have been reading people's posts about how people treat them in regards to their illness. In my very short experience, I too have seen the ignorance and lack of knowledge that is out there about epilepsy and what it means for people. I am willing to admit that I was pretty ignorant before June 08 as well. But what shocks me the most is the treatment and lack of support that a lot off you receive from your own family. People that were helping you with your seizures as a child that still can't accept what you are going through. I know my family weren't very supportive but they haven't actually had to deal with any of my seizures and a lot of the problem was fear. I can't imagine treating my son any differently with or without seizures. He is my son and I love him and that's all that matters, we will deal with whatever comes our way together. All your stories have inspired me to fight even harder to ensure my son never has to go through what some of you have been through. I know I can't do much about strangers but I can make sure that his family will never make him feel any different. I want him to know that no matter what happens in his life, he will always have his family. I'm so sorry to all of you that don't have the support of family and friends but at least you have your virtual family right here!

 

[RobinN]

It really is unbelievable isn't it Kelly.

I can't imagine doing anything less for my daughter. She will soon be taking control of her situation as she nears "adulthood". I will always be there for her though. I hope I taught her how to search under every stone to find the answers. A useful tool to know.

 

[epileric]

It definitely surprised me too

though it also made me realize how lucky I am to be with parents that cared & tried not to make any less of me because of the E.

 

[joan]

Having a supportive family has to help. I cant imagine any other way. I also try and believe most folks that are insensitive, really not dealing with their own fear of the unknown.

joan*

 

[dfwtexas]

Your son is very blessed to have you! It is hard not to have family support, but it makes me appreciate the support I get from here so much more.

 

[Crystal11]

I have some experiences similar to those you talked about too- in school most instructors would not know or understand what a complex partial seizure or looked like or how to help during one. I had to educate my instructors, my sign language interpreters (who after a short time could tell almost immediatly to an aura & seizure), staff and other students and note-takers I worked with. Most of the times my dog would warn me in enough time for me to head back to the dorm.
One day in my college vocational counseling class, my instructor was told in private about a seizure I knew was going to happening. I just thought that all I would do is quiety get up and if i needed help I would ask my interpreters to guide me out into the hall and I would make my way to my counselor's office or sit and stop if i knew i could not make it. But as I started to loose awareness I just remember my interpreters moving the table i was sitting at out of reach. When I asked why I could not leave they said they would rather the nurse come to get me. Well it turnes out that my instructor dismissed class altogether which created some fear since some students in my class knew I had seizures. I found myself with my interpreters, my instructor and three other staff from the school and two EMS workers in the middle of the hallway of another building! My interpreter had a hold of me harsh in fear I would fall down. It would have been so much better to have just sit there or sit in the hallway or call someone to come for me than to dismiss class altogether and cause me embarassment! It is just so strange to me. But I did say thank you the next day or so for everyone's help. I also informed them that its not necessary to call EMS every time and that I would like the nurse or my disability serv. counselor to come for me.
I gave a small card that showed what to do and when to call EMS and how to help to my instructor and staff.

Sometimes it just takes education and explaination of what you want service wise before things happen the way we prefer, without tons of attention or fear etc.

Family support and freindship also helps a lot in dealing with any condtion or impairment.
There are some out there that have no one to help out or provide friendship and care so I appreciate what I have and the fact that there are just some great people in the world.


Everyone take care and be safe.
-CM & Umbro (my guide & seizure resp. do) Bark bark!

 

[brain]

Times have changed a lot since the days I had
been in school years ago; considering my area
was rural. Even though I had a Neurologist, had
EEG's, Neuro-psych, etc --they could not go
any further as to treat me without the parental
consent. So once I became married, only then I
was able to be treated immediately.

This is one thing I am grateful for in the area of
the progression in Neurology. At least the awareness,
treatments, and so much more has changed so much
since my heydays.

I would grade it a BIG A in advancement in this
area while many may not "see" it in this manner,
but keep in mind, I grew up with this, and especially
keep in mind - while this area may be very well metro
now ---> it was not so back then.

KEEP ON PRESSING ON and MOVING FORWARD!

 

[Crazy Monkey]

Your son will appreciate your support and knowledge as he grows up. He will have a lot of questions that you will be there to answer for him. When the time comes it is so important that he understands seizures and finds his own way to cope with them, but it is even more important to have his family right by his side.

When you have a lack of parental support it makes you really treasure the people that do care. Like you said we are a virtual family

 

[skillefer]

Just think though...times have changed! There was a time when you kept people with E locked in the attic. it was a shame...they were supposedly insane or mental.... but now, there are places like this. Thankyou Mr. B. And the more we talk to each other, and educate others around us about E, the easier it will be for our children and grandchildren. Imagine, our grandchildren will walk around in a society that views E as no different than diabetes or asthma....wouldn't that be great? Definitely gives me a goal to work towards.

 

[Belinda5000]

Kellie,

Until my mother or my sisters start having seizures them self they'll never be supportive.
I have one sister every time I talk to her , she has to know about how my seizures are doing not me.
I'm the black sheep of the family who found a great guy and married him .
I've only been married once more 15 yrs. They've all been married 2,3, 4 times.
I shocked them when i married learned how use a computer they still think I'm not to swift because of my E.
That's how a lot of families are, it's like they don't care.

Belinda:agree: