Epilepsy advocates come in many different varieties. They can be those of us who live with Epilepsy, family members or good friends of those with Epilepsy, doctors and others in the medical field who deal each day with Epilepsy…or simply people who understand this complex world, and care.

When I began writing about living with Epilepsy, I decided I wanted to tell both my story and the stories of others, those who live with the disease and those who are connected to those who live with it.

I discovered something I’ve been saving for nearly 8 years. It’s a wire chest full of get-well cards and notes that people sent me in early 2003 when I got sick and received my diagnosis of encephalitis and meningitis. There are literally hundreds of cards, emails, photos, notes.

An aura is described as ‘a distinctive feeling or some other warning sign when a seizure is coming’. For those of us who have auras, they can be so different, and that’s both good and bad.

We never conceal my Epilepsy from our daughter. As she grows, I haven’t been quiet about the fact that other parents are not in agreement with this approach. But, as I’ve said, it’s the way we have chosen to tackle parenting when one parent lives with a chronic disease.

I was told that one of my daughter’s friends will not be able to come over to our house for a play date because of my ‘situation’ as it was termed. The mother does not want to expose her child to ‘anything scary’, i.e. a seizure.

Living with Epilepsy is featured in an upcoming episode of Health Corner on Lifetime.

As someone with Epilepsy, I must teach myself how to avoid stress and how to take better care of ME. We all should. No one can force us to do this, but we have control.

The Epilepsy Community must united and help bring Epilepsy “out of the shadows.”

The more conversations we have about Epilepsy and seizures and the more realities we share, the more we raise awareness. If you’re like me and have seizures, I learned so much from others and their seizures.