Why am I doing this? Because I know what people who have seizures need. We NEED each other. We need to feel worthy. We need to know our lives matter.
My first seizure was in June 1984. My seizures were uncontrolled for ten years. Everything I knew to be normal, was gone & despite getting older, I was still a child who didn't have the emotional ability to grow. I felt excluded from class, after school activities were limited, my future was told to me that I would never drive, get married or have children. Once I graduated from high school I went to a university, like my peers, but I did not know how to make decisions without someone telling me what was acceptable. I wasn't able to stay.
I am 1 of 5 kids and when we would ask a question our mom would tell us, "figure it out." Except, I couldn't.
I felt like an outcast. I was angry. I couldn't communicate what I needed. I was depressed. I felt like life wasn't worth living.
I did get my drivers license, and Ive had it taken from me because of a seizure, and Ive gotten it back back. I did get married, I have a son & a grandson. I even had a job as a traveling insurance agent, until a physician wanted to change my medication & I had auras. I couldn't think let alone drive. I called hospitals and insurance companies, NOT ONE knew where I could find an Epilepsy support group. I had to work to find one...and it was right across the bridge. It was only 1 hour a month, I was unable to volunteer with them because the space they had closes before I get out of work, and I met THE MOST AMAZING SOULS at group. We all have a similar struggle. and I would NEVER EVER think any of them were not worthy. Seizures are more than just the seizure itself. Everyone here understood. They gave me permission to be myself.
I have had 36 years to think about what I didn’t get to do, what I wanted to do, what I could do but can no longer do, what I have had to fight to be able to do and how I could make it right for someone else.I am blessed to have one of the best quality of life's of someone living with a seizure disorder. I want everyone in my community to have the confidence & knowledge that THEIR LIFE MATTERS.
Everyone deserves to feel worthy and included. Everyone deserves a sense of community. Everyone deserves a safe space. Help the EFEPA better reach, serve and connect the NEPA epilepsy community with a gathering space of our own.
Hear me out:
This was a family members wedding. I didn't recognize most people there. From my seizure in 12/2018 through 9/2019, I had trouble with memory and headaches. We looked great, but I felt like I was lost.