Dona | Faces of Epilepsy

May 31, 2019

Dona | Faces of Epilepsy

My name is Dona and I was diagnosed with Epilepsy at the age of 18.

From teenage hood to adulthood, I went to multiple Doctors throughout the east coast. From New Jersey to New York, Boston to Massachusetts, Montreal, Canada to Maryland, and different Doctors throughout Florida.

I’ve had many different tests and treatments, including three brain surgeries. Seen and tested by psychologists and psychiatrists to try and figure out what was going on with me.

Having had so many seizures in my lifetime there’s one particular episode that stands out in my mind. I was 18 and waiting for a train in NJ to go to Manhattan for secretarial school. I had a seizure, and thankfully several men were to pull me away from the tracks to save me from being hit by a train or injuring myself.

Within the same month, my mother was called by my school because I was having Grand Mal seizures. Unfortunately, from that point on I was no longer able to attend the school.

In 1984, I recall having Grand Mal seizures during lunch time while at work. Employees tried to contact my mother to inform her of what had occurred. Shortly after, I was terminated from the company after being employed there for 13 years. I’ve not been employed anywhere else since.

I volunteer my time to and service to the USO, my church and I enjoy being with my church’s single group.

I’ve been on many medications but now I’m on prescriptions from my Neurologist and also Medical Marijuana, .05 mg AM/PM.

When I found Epilepsy Alliance Florida, I was looking for information online about Epileptic Seizures. I saw on the website that they have Support Group meetings in my area. There are two different meetings about equal distance from my home. I went to both initially to see which one I liked best and now I continuously go to the meetings.

Since joining EAF as a client I have been able to participate in the Support Group Meetings, I have had many informative conversations with my Case Manager, Christal, and have even been able to do a television interview for the local news station about my Epilepsy and using CBD oil.

I’ve had to explain to many people about having seizures and I don’t mind doing this. Since I started coming to the Support Group meetings I’m more open and aware on the discussions that I can talk about. I can talk about having seizures and not be embarrassed about that. I can explain to people why I cannot drive.

The Support Group meetings have really helped me because the conversations I have during the meetings help me hear other people’s points of view and allow me to discuss my experiences. They have really helped in my acceptance of myself and my Epilepsy.

Thankfully my seizures are now controlled with the combination of AEDs and CBD oil.

My goal for the future is to be accepted by the outside world.

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