Susan’s Story

My name is Susan and 56 years ago I began having grand mal seizures scaring the living day lights out of my 25-year-old mom. Diagnosed formally at the age of nine and beginning medication at that time, I have never know life without seizures. I fought throughout life to be and do things people told me I would never be able to do. I would not be smart enough (I have two college degrees and owned a business and the retired from recreational therapy, so rewarding). I excelled in sports at the city and state levels and hold a record which a nurse told me I would never run. God bless my mom who allowed me to speak up to her at prove her wrong.

I went on to marry and have two beautiful daughters and then later raised them on my own. When I reached age 38, I had to retired due to increasing seizures and two car accidents (thank the lord no injuries to others.) I have not been able to work ever since. Epilepsy is a disease that affects so many different avenues in your life. People are afraid and sometimes distant because of the unknown so you know from the get go you are different and have to be strong to survive. While on the outside I was always friendly and social, many did not know I had seizures in high school. When controlled, I still knew I was different. I could not swim alone. I had to wait longer to get my drivers license. I had to be the good girl and never taste a beer at high school parties (not that kids should drink, but still I had to be strong against peer pressure).

Then after disability when I could no longer drive and I was raising my girls, I would walk in the snow literally to get groceries (once carrying a turkey) in a duffle bag a mile with other groceries just so I had Thanksgiving dinner. Walking to drugstore at 10pm to get Motrin for daughter who was sick (a mom does anything for their child).

I am blessed to have 3 beautiful granddaughters and one stinking cute grandson. I have been through a lot yet very blessed. What I struggle with the most is the feeling of not being enough. Not being able to give enough and do enough my body is constantly fighting against me. Now my mind is trying to as well. My memory is being robbed, it may be medications I don’t know, still figuring that out. So many aspects of Epilepsy that are unknown and everyone that has Epilepsy has it different. Almost like fingerprints, not all the same. I try my darndest to be upbeat and grateful for all I have had and continue to have and to be able to do and be surrounded by the people I am blessed with. Epilepsy can take over a persons life. It is important to note that Epilepsy is a disease and an Epileptic is a person, not a disease you can catch. We are people, you do not need to be afraid of and we are kind. Join us in finding a cure.