www.outoftheshadows.com/ amy lee of evanescence is supporting, her brother has had three surgeries so far for it.
On a more humorous note:
YES I am aware I have epilepsy. *chuckle*
Actually I take it quite seriously and the Epilepsy Foundation back then the epilepsy society, they both merged, was an amazing help to me and my family and our ability to understand it in a time when we weren't using computers or internet 'yet'. There were no abilities to contact. No LJ communities. You were very much alone. Support groups were 'hidden'. Books were 'taboo' to ask for on the subject in the library.
That was in late 1970's....
The very first book I found on it was in my local library growing up and I actually hid it under my coat and walked with it instead of checking it out because I was so embarrassed. I walked for a long time and wondered at age 16yrs old HOW I was going to show it to my parents??? What would they say??? I desperately needed the information! it was the very first book I had ever found. The only free knowledge I had found on my own without being in a doctor's office or hospital.
When I finally had the guts to go home I waited and showed it at dinner. My parents were speechless. My mother was curious. My father...a hard thing to describe. My father even today is loving, supportive, giving, but in his thoughts he hopes it will disappear someday. It's a parents hope.
They asked where I got it and I told them about my trip to the library and I admitted taking it...
They never scolded me but instead finished dinner and went into their bedroom and closed the door and I heard them discussing it and their differences of opinion on whether or not I actually HAD the condition or not. THEN...mom and dad came out and it was dad who said to me...'your mother is going to call around and try to get you/us our own copy of the book.
It was a big moment. Recognition of the 'possibility' of a reality check on what I was going through.
Somewhere in my stuff I still have that very first book.
YUP I am AWARE.
On a more humorous note:
YES I am aware I have epilepsy. *chuckle*
Actually I take it quite seriously and the Epilepsy Foundation back then the epilepsy society, they both merged, was an amazing help to me and my family and our ability to understand it in a time when we weren't using computers or internet 'yet'. There were no abilities to contact. No LJ communities. You were very much alone. Support groups were 'hidden'. Books were 'taboo' to ask for on the subject in the library.
That was in late 1970's....
The very first book I found on it was in my local library growing up and I actually hid it under my coat and walked with it instead of checking it out because I was so embarrassed. I walked for a long time and wondered at age 16yrs old HOW I was going to show it to my parents??? What would they say??? I desperately needed the information! it was the very first book I had ever found. The only free knowledge I had found on my own without being in a doctor's office or hospital.
When I finally had the guts to go home I waited and showed it at dinner. My parents were speechless. My mother was curious. My father...a hard thing to describe. My father even today is loving, supportive, giving, but in his thoughts he hopes it will disappear someday. It's a parents hope.
They asked where I got it and I told them about my trip to the library and I admitted taking it...
They never scolded me but instead finished dinner and went into their bedroom and closed the door and I heard them discussing it and their differences of opinion on whether or not I actually HAD the condition or not. THEN...mom and dad came out and it was dad who said to me...'your mother is going to call around and try to get you/us our own copy of the book.
It was a big moment. Recognition of the 'possibility' of a reality check on what I was going through.
Somewhere in my stuff I still have that very first book.
YUP I am AWARE.
posted by:
|
New York City
|
