Wednesday, March 26 is the Global Day of Epilepsy Awareness (also known as “Purple Day” thanks to 15 year-old Cassidy Megan, founder of the Purple Day Organization).
|Purple Day 2012|
Along with many other epilepsy education advocates, I will be wearing purple. A purple sweater, purple earrings, and a purple bracelet – heck, my nails are painted purple and I might even break out my purple shoes.
Why am I wearing purple? After all,
Wearing purple is not going to cure epilepsy.
Wearing purple is not going to stop the increased seizures Robert is having.
Wearing purple is not going to increase funding for epilepsy research.
Why am I wearing purple? I am wearing purple because:
My brother, Robert, is 1 of 3 million Americans who has epilepsy;
Robert’s seizures are not controlled but he is hardly the exception. A third of people with epilepsy have seizures which can’t be controlled with treatment and which can lead to brain damage and death;
Robert wants to spread awareness about epilepsy and I promised him I would help;
I want to dispel myths about epilepsy. To be clear: it is not contagious; it does not mean the person is possessed and a person cannot swallow their tongue during a seizure;
Epilepsy is not something to fear;
Robert has Complex Partial Seizures – one of 40 different kinds of seizures;
But mainly, I am wearing purple because:
Robert has had epilepsy his entire life. I remember him as an energetic, curly-topped boy who was notorious for getting lost in shopping malls. He struggled in school but managed to take a few community college courses once he graduated high school (a feat our mother wondered if he would ever accomplish). Robert lived by himself and with a companion (she also had epilepsy) and they were able to care for each other for many years.
Now, Robert lives with me and my husband because he can no longer take care of himself. He needs help taking his medications, getting dressed and cleaning up in the bathroom. Robert wears a helmet because his seizures make him fall, he uses a walker because his balance is awful and repeats questions because his memory is pretty terrible.
I have seen Robert deteriorate through the years due to the uncontrolled seizures, the medications, the surgeries, the accidents and the falls. He has had mood swings due to the medications and can be stubborn and obstinate as heck.
But mainly, Robert teaches me that it is okay to enjoy the simple things in life. He is happy watching Family Feud and doing his Word Search puzzles (usually simultaneously so multi-tasking obviously runs in the family). He enjoys Rocky Road ice cream more than anyone I have ever seen and would eat it after every meal if we let him. He has found comfort in what seems to be a direct pipeline to God – he prays for everything and everyone. I do not have this kind of faith but I admire him for his conviction and his beliefs.
Our family never thought Robert would live a long life. We weren’t being morbid but knew that with his determination to be independent and his uncontrolled seizures there was a strong possibility he would die young. He almost did – he had a seizure in a swimming pool as a teenager and was saved only because our dad immediately jumped in after him. He was in a coma for a few days but he survived.
It was after this coma that he felt his purpose was to spread awareness and education about epilepsy.
I am wearing purple today to celebrate Robert’s determination, his persistence and his purpose.
Please don’t be afraid to ask me about epilepsy and don’t be afraid to talk about epilepsy.
Help Robert spread epilepsy awareness – wear purple!
(And if that means buying a new pair of purple shoes, you have my full support albeit tinged with a little bit of jealousy!)