Going Purple … With Pride
Epilepsy has played a big role in our family’s life. For a very long time.
The Blue Jay (my oldest daughter) had her first seizure when she was 13 months old and she was diagnosed with a “seizure disorder” when she was 2 years old.
Despite the doctor passing me a pamphlet from our provincial epilepsy association when he gave us this diagnosis, it was quite a long time before I actually put two and two together. And realized that “seizure disorder” was just another way of saying epilepsy.
It’s amazing how huge language is. How it can so easily hurt. Come with so many stigmas attached. Can be used to build someone up. Or tear then down. Sometimes without the speaker even realizing it.
And so it is with the word epilepsy. There’s a certain stigma attached. Although it doesn’t carry as much baggage as the words “mentally retarded”, for example, for some people there’s still a certain sting to it. And if you doubt that, try the word “epileptic” on for size and see if you feel any differently. Think of it applied to your son or your daughter. Or yourself.
And so it was understandable that 9 year old Cassidy Megan didn’t want to tell her classmates that she took seizures. That she had epilepsy. She was afraid they would make fun of her. Can you blame her?
Posted by Michelle
On March 24th, 2009 under Disabilities, Health.
Comments: 2
Comments
Comment from Idaho Joe
Time: March 27, 2009, 8:11 am
Michelle, thanks for posting about this and also thanks for keeping the Flight Deck alive. I’m sorry I missed wearing my purple shirt yesterday, but next year for sure.
I have a niece who got bone cancer in her upper arm several years ago. Luckily for her and our family she made a full recovery, still has use of her arm and is cancer free.
I’ve never really liked the expression “What doesn’t kill us makes us stronger,” but sometimes it just fits. This young lady was already special to us, but her strength and bearing, after being put through the crucible, is truly amazing. At the age of 14 she asked to be in the room when the doctors were discussing her grandfathers cancer prognosis (we had a wonderful wake for him last year) so that she could be of comfort to “Grandpa.”
I just love these stories of strong kids.
Comment from Sandi
Time: April 4, 2009, 8:19 pm
Our Kimberley, who is now 7, had her first seizure before she had her first birthday. She has never been self-conscience about her epilepsy. She is quite open with her friends and classmates about her condition. She knows the importance of taking her medication and has never balked at carrying her diazepam with her at all times. As far as she is concerned, epilepsy is just a part of her – like her blond hair and green eyes.
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