Purple Day is Epilepsy Awareness Day
By: Beth Nuss
When my daughter Taylor was diagnosed with epilepsy I felt like it came out of nowhere. The seizures started subtly and went unnoticed for several months; still we knew something was wrong. Taylor was forgetting her homework, going to bed in her day clothes, and wearing the same outfit two days in a row. None of that would be considered normal behavior for a thirteen-year-old girl. When I spoke to the pediatrician about these occurrences, even she didn’t immediately suspect epilepsy. Even after a battery of tests, including an EEg, her condition couldn’t be labeled as epilepsy because there wasn’t any hard evidence.
Finally one day we observed a seizure for the first time. I can only describe it as a short period of time where she was unaware of her surroundings followed by lip smacking and picking at her clothes. These seizures became more frequent and more pronounced as time went by. Eventually the evidence made it clear that Taylor had epilepsy. She was treated for the next eight years with many different anti-epileptic drugs, each of them failing after a few months of use, while the seizures became worse and very noticeable. I was fearful that she would get hurt.
School work became an exhausting chore. Her memory grew increasingly worse as the seizures continued and the mind numbing drugs made her inattentive and tired. The school listened to my concerns and tried to understand but they were not equipped to deal with a child with epilepsy. They had never dealt with it before and were completely unaware when Taylor was seizing in school but I knew it was happening. After seven years of seizing at home sometimes ten to twenty times a week, it’s impossible to think that it never occurred between the hours of 8am and 2pm Monday thru Friday. I would like all teachers to be trained to notice when children in the classroom are behaving strangely, attempt to identify what is happening and report the actions to the child’s parents.
I feel like there is a general unawareness of what epilepsy is and how it affects patients and their families in our society. Countless times I tried to explain to people who ask, “how’s Taylor doing?”, that the meds aren’t working, she’s still seizing, she has trouble learning, she can’t remember, she’s tired all the time, she doesn’t laugh and smile like she used to, she can’t drive, she can’t swim, etc. etc. etc. It is hard to understand when you don’t live with it daily and have never witnessed a seizure. And that’s one of the reasons I would like to bring more awareness to epilepsy.
Fortunately Taylor was finally able to have epilepsy surgery and has been seizure free ever since. Her two-year anniversary is coming up on March 26, 2015, on Purple Day. She still takes some medications as a precaution but her activity level, confidence and overall disposition is markedly better. Our family will celebrate Purple Day together at The Harp with the Cleveland Epilepsy Association and we will continue to support the many families in our community struggling to come to terms with the diagnosis of epilepsy and the enormous challenges it brings.